Women with Bleeding Disorders: Resilience, Hope, and Advocacy with Dr. Danielle Nance

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_08 (00:00):
Welcome to the Hope Podcast.

(00:01):
My name is Jonathan James, andI'll be your host today to talk
more about women with bleedingdisorders.
I'm really excited about myspecial guest today, but I want
to say a really important thankyou to our episode sponsor,
Janintec, for sponsoring thisepisode.
Welcome to the Hope Podcast.
My name is Jonathan James, andit is such a treasure to be able

(00:24):
to bring to you a greatconversation today that I'm
excited about.
Dr.
Danielle Nance.
It is great to see you.
Thanks so much for joining metoday on the Hope Podcast.

SPEAKER_06 (00:33):
It's great to be here, Jonathan.
It's I know it's taken a whileto get here, but I'm glad that
it finally lined up for us.
Yeah.
And this beautiful morning inLouisiana with the sun sparkling
off that bright green.

SPEAKER_08 (00:48):
Well, the best things are things you usually
have to wait for.
So I have been looking soforward to this for a long time.
And we've been friends for along time.
I was trying to remember backhow long ago it was we first
met, but it it was probably overa decade.
And uh and so I uh I just, youknow, we've we've uh been able
to, you know, talk through a lotof life together through the
years, and and uh I've just uhjust been such a joy to be able

(01:12):
to know you as a friend, butalso just have so much respect
for the work that you do.
And uh I'd love to just start alittle bit there for people
maybe listening in that don'tknow you as well as I do.
Maybe share a little bit aboutuh where you live, where you're
from, and what you do for aliving currently.

SPEAKER_06 (01:27):
Thank you.
Uh today, right now, we'reliving in Arizona.
So uh kind of in the PhoenixMetropolitan Catchment area.
Yeah.
I work in one of the suburbs,Gilbert, Arizona, at Banner M.
D.
Anderson Cancer Center.
They have created a nice homefor me there and a spot for me
to take care of classicalhematology patients, um, but

(01:51):
also my life's work, my desire,which is to take care of
bleeding disorder patients andto help them find a safe place
to live and to be hospitalizedwhen needed.
But um, mostly so they haveaccess to the right treatment at
the right time and according totheir needs.
So that's what I do.

(02:12):
Banner's helping me do that, andI'm super grateful for that.
Um, my uh yeah, so didn't knowI'd end up in Arizona, but I'm
really excited to be there.

SPEAKER_08 (02:23):
Yeah, from Utah originally, right?

SPEAKER_06 (02:26):
My family is from Utah.
I was actually uh born when myparents had a so turn in
California.
Oh wow.
They spent about 10 years inCalifornia and uh maybe a little
longer than that.
Uh four of the five of us wereborn in California, and then San
Francisco got a little wacky inthe uh in the mid to late 70s,

(02:47):
and my parents relocated us toUtah to a small town near a
college.
So a small college town in ruralUtah.
And that's where I spent mychildhood and until I was 18 and
could leave that small town andhead back to the city.

SPEAKER_08 (03:03):
That's awesome.
That's awesome.
Well, I want to talk a littlebit about um, you know, you're
you're you're in the throes oftalking about what you're doing
now.
Um, you know, you're in thethroes of treating people in the
hospital, people living withhemophilia and various bleeding
disorders.
Um, and really at that point ofcare, you're dealing with uh
really having to deal with a lotof expert decision making in

(03:24):
crisis moments and and also withthe daily management.
And I think that the burden ofthat is is uh something to be
admired and cherished, and andI'm so grateful for the work
that you do and the stories thatwe hear from patients that you
serve, we're just so gratefulfor everything that you do.
But it didn't start at BannerHealth.
It started many, many years agobefore that in Utah.

(03:47):
And so talk to us a little bitabout um your background.
Like what was it like growing upand and also you're personally
affected by bleeding disorder.
So tell me a little bit aboutwhen that when did you discover
that and and what that was likegrowing up.

SPEAKER_06 (04:01):
Uh okay.
So actually there's a really funstory there.
So I mean, scary, but also fun.
I I always had bleedingsymptoms.
I was that baby who hadhandprints on their butt from
changing diapers and you know,bruises.
Um the I think one of thescariest times.
My mom is still traumatized bythis.

(04:23):
My um, I was cutting my bottomteeth.
I actually still have a scar onmy chin.
And um I fell, I think, on thesliding door, and that little
tooth sliced my my chin, wentthrough my lip.

SPEAKER_02 (04:39):
Oh my gosh.

SPEAKER_06 (04:40):
And um, I, you know, so I'm like, I'm like, what, 18
months old?
I don't know, very big.
And um uh and it wouldn't, itwouldn't quit bleeding.
And, you know, um, so it would,you know, it would start and
stop and start and stop.
And like any kid withhemophilia, they have a mouth
bleed and the enzymes in themouth just digest through that

(05:00):
little clot, you know, and it'sit's bleeding all over again.
So my parents are, you know,very thoughtful, um, religious.
It was Sunday.
They got my older brother andsister and me together, take us
to church.
My mom was so tired becauseshe'd been up all night with me
and um and not just for one day,but several.

(05:23):
And uh, and one of the um one ofthe ladies at church offered to
hold me for a minute so shecould go into the bathroom and
rest for a minute.
And that lady dislodged the clotbecause she was like, because
I'd finally stopped bleeding,and there was a clot in my mouth
and it wasn't bleeding anymore.
My mom had let it be there.

(05:44):
And this lady, this kind lady,you know, she was gonna clean me
up.
Oh.
And uh anyway, so after that, Iended up at the emergency room.
And um, she'd taken me to thedentist, and the dentist had
tried to cauterize it.
I mean, I was the first in myfamily and the only one among my
sibs to have hemophilia.

(06:05):
And so I, you know, and and sowe were in the emergency room,
and um, I think that was thetime when my my I was taken away
from my parents, and they weresent to like the social work or
the police to be interviewed umabout child abuse.

(06:27):
Yeah, it wasn't the first time,but they didn't recognize the
bleeding disorder.
Um, my mom has stories about mecrawling into bed with her with
uh that bleed or another one,and and her um waking up covered
in blood and then going to mycrib and picking up my pillow

(06:50):
and it dripping with blood.
Oh my god.
And I didn't, you know, I didn'tdie.
But uh I still didn't get thediagnosis of hemophilia until I
was two and I had my first jointbleed, and it kind of coincided
with when we were gettingpictures, you know, those cute
little pictures that parents getof all their little kids.

SPEAKER_08 (07:12):
All in mills, and like something like that, right?

SPEAKER_06 (07:15):
Sears, yeah, something like that.
And so uh with joint bleeding,there aren't a lot of conditions
that cause that.
Um but hemophilia A and B arethose.
So hemophilia A and B affectmuscles and joints in ways that

(07:37):
most other bleeding disordersdon't happen unless the bleeding
disorder is really severe.
And then that it's not sosubtle, like you're gonna figure
that out pretty soon afterbirth.
But um, but not with hemophilia.
So uh so when I showed up,because I I I wouldn't stand on
my knee, I wouldn't stand on myleg, and it was barely swollen,

(07:59):
you couldn't tell.
Um, but there's that's picturesactually hanging on my wall.

SPEAKER_00 (08:03):
Wow.

SPEAKER_06 (08:03):
The one where I'm at least not crying, I'm not
smiling, but I certainly don'tlook happy.
And my older brother and sisterhave this super cute cheesy
grins.
And I'm standing there just, youknow, like stoically.
So that that's when I wasfinally diagnosed with
hemophilia.
So I was about two.

(08:24):
Oh, and um, and uh the lore,which actually I love, is that
you know, they couldn't figureout what's wrong.
Um, and some female medicalstudent who didn't know any
better suggested I might havehemophilia.
And that's what led to themdoing the right test and finding
the hemophilia.

(08:46):
So my so I love this story, andI just think that, you know, are
that there's always a tensionbetween the structure and free
thinking.
And you do you really have tohave structure in order to allow
gene genius to fully develop, ordo you need that free,

(09:08):
unstructured time to allow thoseother ideas to really surface?
Um, and and so that's a fun, youknow, that's a fun place to live
and to think about the theboundary of understanding and
how it exists um between thosetwo states.
Um, so I had a diagnosis at theage of two.

(09:30):
This would have been in 75.

SPEAKER_03 (09:33):
Wow.

SPEAKER_06 (09:34):
Um my but um even my parents weren't 100% sure that
it wasn't von Willebranddisease.
And so there was always therewas a lot of actually debate as
I was growing up.
Did I have factory deficiency ordid I have von Willebrand
disease?
Because the two were thrownaround a lot.

(09:56):
I mean, von Willebrand diseasewas well recognized as a
disorder that could affectgirls, but hemophilia rarely
affects girls.
Um, and it certainly hemophiliawasn't well known anyway in the
70s.
Um things have changed a lotsince then.

SPEAKER_08 (10:16):
Um and you didn't have any other like siblings or
family history of anyone elsehaving nobody else bleeds except
for me.

SPEAKER_06 (10:25):
So it's it's very incre incredibly difficult to I
have sibs on my dad's side fromhis third from you know from his
cohort.
He has half sibs also.

SPEAKER_07 (10:35):
Wow.

SPEAKER_06 (10:36):
Um that none of them bled, and and none on my mom's
side, and there are um sevenkids in her cohort, her birth
cohort.
So, you know, a lot ofopportunity for bleeding deserve
to be around, but nobody else,and no, no, none of my cousins.
It's just me and now my sonIsaac.
So just the two of us among allthose 50-something cousins on my

(11:00):
mom's side, and it's amazing.
A lot on my dad's side, I don'teven know how many.
So, yeah, so bleeding disorderswere new in the family, and
because of that, I will say thatI felt really, really alone.
My older brother and sister, Ilove them so much now, but they
were not nice to me because theyhad a perfect life until I was

(11:22):
born, and then I was alwayssick.

SPEAKER_03 (11:24):
Yeah.

SPEAKER_06 (11:25):
And, you know, and my um bleeding disorder is
moderate.

SPEAKER_03 (11:30):
Okay.

SPEAKER_06 (11:30):
So factor levels between two and four percent
pretty consistently.
And I went back when I worked atthe University of Utah and saw
the factor levels that had beendrawn when I was 18, 19, 4%.

SPEAKER_03 (11:44):
Wow.

SPEAKER_06 (11:45):
Factor levels when I was in med school were eight
percent.

SPEAKER_03 (11:49):
Wow.

SPEAKER_06 (11:49):
And I think I was on, no, I wasn't even on birth
control there, but I don't thinktheir assays were as sensitive
as the ones done at theuniversities.

SPEAKER_01 (11:57):
Interesting.

SPEAKER_06 (11:58):
So really pretty low factor levels.
And so, um, but not zero.
So while I was always coveredwith bruises and always oozing
from some cut, um I I didn'talways have the big bleeds.
So it was, but it did seem tohappen whenever we were on

(12:18):
vacation or doing something fun,because that's when hemophilia
always gets in the way.

SPEAKER_01 (12:24):
Right.

SPEAKER_06 (12:24):
You know, you're going to on your trip to
California and somebody pullsyou wrong and you slip and you
get that bleed in your ankle.
And then what do you do?
Yeah, I remember being atSeaWorld and having uh, I don't
remember which joint it was, buthanging out, you know, like

(12:44):
limping around that park thewhole day and just because, you
know, and um, and then we mysister and I got to go and spend
um a week with my aunt Jan.
It was before she had kids.
So we were staying at herapartment in the avenues, and
and she and her husband took usto the park.

(13:06):
And so my sisters, you know, Imean, she's five years older
than me, but she was also muchbigger than me, too.
So kind of heavier set even as agirl.
And so uh we were playing on theteeter totters.
You remember the old ones withthe the wooden teeter totters
and the tea?

SPEAKER_07 (13:26):
Yes, yeah, yeah.

SPEAKER_06 (13:27):
Oh yeah, you know those, right?
Oh yeah, oh yeah, dangerous.

SPEAKER_08 (13:31):
I got my ankle caught under one one time, and I
paid for that for a long time.

SPEAKER_06 (13:36):
I have a similar story.
Okay.
So she, you know, so she wouldgo down and then bounce.

SPEAKER_07 (13:42):
Yeah.

SPEAKER_06 (13:42):
And I would bounce up off.
Yeah.
Oh my gosh, I loved it.
We had so much fun.
And so then, um, so we did thatand I was fine.
No injuries, perfectly fine.
I mean, felt like I was gonnafly off the handles, but we had
a great time.
And then she got up off theteeter-totter, and then instead
of letting me down gently, itlike slipped out of her hands,

(14:04):
right?
She got off and I fell down tothe bottom, and and my knee
caught right under that handle.
So uh left knee pain ever since.
But then I'm on the couch,right?
And I cannot move.
And my aunt wrapped it up, andyou know, and I I mean, you

(14:24):
can't you can't move, you can'tstand up.
Your older sister's like, you'reruining it for us, you know.
And I I literally cannot, uh,you're so uncomfortable.
And you know, and I um I don'tknow if it's because I was the
middle child, um, but you know,I I just I learned not to talk

(14:46):
about it.
You know, you just you hide it,you hide it.
Even though you're you're it'sswollen, obviously.
Anyone can see, but no one knowswhat that feels like.
And you know, and as a as a medstudent, and I learned what that
means, that it's the bloodpressure that meets the tension

(15:06):
on the skin before that jointstops bleeding, and you feel
every press of your heartagainst that joint capsule, and
that isn't fun.
And it takes a long time beforeit stops bleeding and stops
hurting, and standing in theshower, you know.
And I um I had I had had factorwhen I was four, right before my

(15:32):
fifth birthday.
I think I had been jumping offthe bunk bed with my older
brother and um and ended up withan ankle bleed.
And so whole family.
I it might have been it mighthave been for Christmas, it
might have been forThanksgiving, but we lived in

(15:53):
about two and a half hours bycar away from my parents'
families in the north near SaltLake City and Farmington area.
So, you know, for Thanksgivingand Christmas, we would always
head up north.
And I think um so it had beenbefore, it had been before, and
um, I'd had the ankle bleeds, soit was sometime around the

(16:15):
holidays, and so they put me inthe car, in the back of the car
with this big fat ankle, and itwas cold, and it was before the
time before seatbelt.
So I'm in the back and bouncingaround, and um, I mean, I
remember that ride.
It was so painful.
I'm like four, right?
And I was cold and I hurt, andthen we ended up, and it was

(16:36):
dark outside, and we're in theER, and um somebody put me, put
my foot upon a pillow and packedit with ice, so I was already
freezing, and they put icearound my ankle, and then they
took me into a room without myparents.

SPEAKER_05 (16:58):
And they eventually gave me some fatter.
So they put an ivy in withoutand there was some lady You
know, because they had a youknow that the communal rooms,
right?
With just the sheets between soit wasn't like it wasn't like I

(17:22):
was alone, but I wasn't withoutmy mom.
This poor lady, you know, shewas, you know, she reached over
and tried to comfort me the bestshe could.
She was an ER2, right?
I have no idea what her storywas.
And um, so they gave me factor,and I don't remember anything
else but that.
Um, but a few weeks later, um,all the kids were together and

(17:48):
um and I was sick, and so westopped at the hospital again.

SPEAKER_06 (17:54):
And I had I had hepatitis C.
So it was right before HIV.
But um that infection thatturned me yellow, and my mom
said I was sick for almost awhole year, and I I didn't eat
my birthday cake, my sister ateit because I was sick and I
didn't want to eat anything.

(18:15):
And um, but that probably savedme from HIV because after that
my parents did not take me toget factor.
Why?
And I I sat on the couch untilmy bleeds went away.
Um, the only time I got factoris when I broke my arm.
And uh, that's another greatstory chasing a boy, slipping on

(18:38):
some grass.
So yeah.
I was eight, I was in the thirdgrade.
Oh my gosh.
But um, yeah, but uh so the thefactor the factor um that gave
me hepatitis C allowed me toescape from HIV.
So I'm grateful for that.
But it was still, you know, itwas still a lot.

(19:01):
And then there was alwaysconfusion, right?
Some doctors would tell me I hada bleeding disorder, others
didn't.
Um it was shameful to me.
So I think I think that havingthat duality and trying to make
sense of that and knowing thelimitness, the limitless of my

(19:27):
mind.
And when I didn't have a bleed,I was strong, and I could ride
my bike bike so fast.
And then having my parents tellme, don't run, Danielle.
And I'm like, what are youtalking about?
You know, my body feels great.
I love being in my body, right?

(19:48):
Right.
You know, and like you know, I II mean, I think we all have that
degree of joy of just beingalive when you're a kid.

SPEAKER_08 (19:58):
One of my favorite memories as a child for me was I
used to love to run.
And I would run in the backyardand I would just run and run
around.
I I I felt like I was going 100miles an hour, probably only
going like, you know, you know,not that fast.
But you know, I had this uh dogfor a period of time that would
chase me around the yard, and mywhole goal was to run faster
than he could.
And I'm pretty sure that hecould always catch me, but he

(20:20):
would let me win.
And that was just, I justremember the wind in my face and
just this running.
And and inevitably I had waymore ankle bleeds than I had the
ability to do that.
But it was those few days wheresometimes it you could do it
without you know a problem, andthen other days it would turn
into some massive hospitalvisit.
But you know, I remember thattoo, or just like, I just want

(20:40):
to do this, I want to run, Iwant to be free, I want to feel
the wind in my face, and and uhit's so odd how like sometimes
you could do it and it was likeno big deal, and then other
times you you know, the smallestlittle you know twist wrong.
Right, yeah, a little step in alittle hole in the yard or
something and you're done for.
Yeah.
Yeah.

SPEAKER_06 (20:59):
Yeah.

SPEAKER_08 (20:59):
And and dealing with the emotions of that as a child,
too, is very uh I think I thinkthis is a difference between
sometimes men and women is likeguys are so thick-headed, we're
we're just gonna like keep beingbullheaded about it and try it,
you know, over and over again.
But I think sometimes like oneof the things I've learned from
watching my girls go throughtheir suffering with a bleeding

(21:20):
disorder, it's like there is a,there's a uh they're present in
it mentally and emotionally whenit's going on.
And I think for me, it was likeI would just get angry and I
would just get, you know, I'dwant to reject life, I'd want to
reject everyone around me.
I'd want to, you know, there's asense of like, and then and as
soon as it was it was over, itwas like I just didn't want to

(21:41):
deal with what just happened,you know, like whatever that
experience was.
I just wanted to get over it,you know.
But watching my girls go throughthat, they they they approached
it differently.
Like they, it was like they werereally present in it.
And then and then when it wasover, when when a bleed was
over, something was going on, itwas like there was this sense of
like, you know, it it was it itlived with them.
There's a sense of like thiscontinuation of processing, and

(22:04):
it seemed to be connected, youknow.
And I and I've I've actuallylearned from watching them go
through it how to process my ownmental and emotional, you know,
uh well-being through all ofthat too, because I I I I don't
think I always process that as akid, you know, right not that
anybody really processed itperfectly, but it's just there's
a sense of like, you know,having to deal with that.

(22:25):
I know for you that you'resurrounded by people who don't
understand the clinicians thatyou're seeing have mixed reviews
on whether or not it is this orisn't this.
You know very presently what'sgoing on in your body, but then
you're just a kid.
And so it's how did you dealwith all of that?

SPEAKER_06 (22:44):
Well, you just said a lot of things.

SPEAKER_08 (22:46):
I know.
Sorry.

SPEAKER_06 (22:48):
Thanks for sharing your perspective also.

unknown (22:51):
Yeah.

SPEAKER_06 (22:52):
That joy de vie of just being alive, yeah, and know
and having those periods ofsuper strength, yeah, and then
being restrained hardcore.
And it's not because anybodytold you you couldn't.

SPEAKER_01 (23:07):
Right.

SPEAKER_06 (23:07):
It's because you really cannot.

SPEAKER_01 (23:11):
Right.

SPEAKER_06 (23:12):
And no one can save you from that.
There's nobody, no one, there'sno superhero that's gonna be
able to remove that pain foryou.

SPEAKER_01 (23:22):
That's right.

SPEAKER_06 (23:23):
Doesn't matter how smart they are or how you know
much money they have, or how youknow absolutely.
So I don't think I processedthat well as a child either.
And I don't think any adults inour time really had the skills
to process that.
You know, we just, you know, thetime in the 70s were a strange

(23:45):
time looking back on it.
Um, we had uh cheap gas, we hadfast cars, we had telephones
that you weren't 25.
Well, they still were, butstarting in the 90s, voiceover
IP started and the prices ofphones came down.

(24:06):
But the information exchange waspicking up, and then we had
factor, it wasn't perfect, butwe still had something better
than a blood transfusion totreat hemophilia.
So things started changing allthrough the world.
And we have children now thatare teaching us we might have
ADHD, which I definitely haveand didn't know it.

(24:30):
So part of my unbridled energywas a very busy mind and um
being hyper-focused on somethings and not on others.
And I think hemophilia tends topush you into a place where you
can have a fantasy land a littlebit and escape what's happening

(24:51):
around you.
So um, you know, so I meanhemophilia is good and bad.
I I uh I gosh, never expected tomake it to 50.
I pretty I was pretty sure Iwasn't going to.
I remember having aconversation, I think even
before my period started, wheremy mom was I was so excited, I

(25:14):
wasn't gonna I was gonna growup, I was gonna have five kids,
I wanted to be a mother, youknow?

SPEAKER_03 (25:18):
Yeah.

SPEAKER_06 (25:19):
And my mom like super serious.

SPEAKER_03 (25:22):
Yeah.

SPEAKER_06 (25:23):
No, Danielle, not for you.

SPEAKER_03 (25:25):
Yeah.

SPEAKER_06 (25:26):
What?

unknown (25:28):
Crushed.

SPEAKER_06 (25:29):
I was crushed.
I was like, what are you talkingabout?
You know, I mean, I'm a baby, Idon't know.
Yeah, I don't even know whatthat means.
I haven't even had a period yet,you know?
And it was later, much later.
My mom and dad had been toldwhen I started my periods I
might not survive that firstone.

unknown (25:46):
Wow.

SPEAKER_06 (25:46):
So I had been treated differently than my
sips.
I knew this, they all knew it.
And I didn't know why.

unknown (25:55):
Wow.

SPEAKER_06 (25:56):
I didn't know why until much, much later.
I mean, I think I was maybe evenin my early 20s before my mom
admitted that to me because Ihad paid made it through my
phrase.

SPEAKER_01 (26:06):
Right, right, right.

SPEAKER_06 (26:07):
Now they were messy, but they were mine, you know, so
I didn't know any differently.
Right.
You know, and um uh yeah, I wentthrough a lot of pads, but
again, you only know that wasmine.

SPEAKER_01 (26:20):
Yeah, right.

SPEAKER_06 (26:21):
So um anyway, so we, you know, we we weathered a lot
of we weathered a lot ofuncertainty.
I made choices that I didn't I Iin retrospect I wouldn't have
needed.
I suffered depression andtreated that with substances
that um probably weren't thatgreat for me.

(26:42):
But um I I mean those were thatwas all I had.
And that's you know, um, andthat's what that's what I did.

SPEAKER_08 (26:51):
And so treatment for going when you're going through
your mint menstrual cycles wasnot probably not even on the
table.
They weren't even thinking aboutprescribing back then for that.
Yeah.
Wow.

SPEAKER_06 (27:01):
No.
I I I got married really young,so I was only maybe 19 when I
got married.
Yeah, yeah.
And then I got on birth controlpills, and that did help with a
lot of symptoms.
So um the the nine years or so Iwas on birth control or whatever
it was, eight years maybe, um mybruising was better and my
periods were better.
And I didn't realize at the timethough, but the estrogen itself

(27:25):
helps to seal up the leaksbetween blood vessels.
Wow.
And so estrogen treatmentactually does help with bleeding
symptoms, and it's a greattreatment for people who um do
not net yet need their uterusand ovaries.
So um, yeah, so that was a bonusthat I didn't expect to get.

(27:45):
The happy accident, that'sright.
Um, but uh yeah, so uhdefinitely difficult young, uh
young adulthood.
So, so but I will say my uh I Ifeel blessed and lucky, and I
know there are times whenwhatever is out there has
protected me.

(28:06):
And I, you know, it's almost asif I had some little angel on my
shoulder saying, No, when acouple of my girlfriends got
into like heavier substances andthey never offered them to me.

SPEAKER_02 (28:20):
Why?
Right?

SPEAKER_06 (28:21):
They never it was never even they and I I found
this out later that they, youknow, in fact they sort of
distance themselves because theyinterested, they weren't even
gonna, you know, no, this is notfor her.
And and other times in my lifewhere um I I could have I either

(28:42):
was able to remove myself fromsituations or situations removed
themselves from me and I feltprotected and I felt loved and
that um when I I dropped out ofcollege for three years and
found my way back and withsupport from some family members
so I could get back in there.

(29:03):
I lost my scholarship, but so Icould get back to school, people
who, you know, recognized in methat there was more than a
bleeding disorder.
And um, but things actuallydidn't really turn around for me
until the bleeding disorderscommunity and I found them

(29:23):
through my treatment center.
I I was like, look, I reallythink I want to be a doctor.
And they're like, Well, we don'thave but I need volunteer work.
And they're like, Well, we don'thave anything for you, so why
don't you go to your localchapter that was a Utah chapter
of the National HumothillFoundation?
And um, and for the first timein my life, a woman who didn't
have a bleeding disorder, butknew a lot of people with

(29:46):
bleeding disorders listened tome and knew when I said I would
get that tingly bubblingsensation in my knee, she'd
heard that before.
And so suddenly I had alanguage.
I had a language to talk aboutwhat had happened to me in that
loneliness of physicians notknowing, showing up at ERs and

(30:09):
them and saying, I havehemophilia.
I have factor eight deficiency.
I could say those words as a16-year-old.
I have factor eight deficiency.
I need factor eight.
And the doctor looking at me andtaking more blood and saying,
You don't have hemophilia.
You have on Milibrand's disease.
And you're not bleeding rightnow, but I just came from I have

(30:30):
this cut in my mouth.
I just picked up my pillow andit was dripping blood.
And I know I'm gonna re-bleed.
And they're like, You're notbleeding now, go home, and me
coming back a few hours laterwith now a big swollen libbin.
You know what I mean?
Like, and this happened everytime there was a problem.

(30:52):
So, so yeah, I went intomedicine with prejudice.
Why are the smartest people onthe planet so dumb?
And no one can tell me what'swrong with me.
What is wrong with me?
I don't know.
I really want to know.
And I honestly, um, you know, II I went to medicine to learn

(31:15):
about hemophilia and what waswrong with me.
And medical school taught me howto be a physician.
Um, I felt like an infiltratorfor years.
I'm like, all I care about ishemostasis.
Get me into the clotting factor,show me about that, you know.
And then I'm like, wait, what'sthe PT and the PT again?

(31:36):
What's the intrinsic plastic?
Wait, what are all thesefactors?
Uh wait, I need to know renaldisease.
What are you talking about,Gout?
This is an old disease.
This doesn't even have anypeople anymore.
So, you know, I was a historymajor, um, but mostly because
that was gonna be easy for me toget straight A so I could get

(31:57):
into medical school, right?
Like that was my whole idea.
I love history.

SPEAKER_07 (32:02):
Yeah.

SPEAKER_06 (32:03):
And so when I started picking up the history
of medicine books and learningabout the history of medicine,
then I could learn medicinebecause that was the language
that I knew.
So it was really, you know, mefiguring out how does my brain
work?

SPEAKER_01 (32:20):
How do you learn?

SPEAKER_06 (32:20):
How can I figure this out?

SPEAKER_01 (32:22):
Yeah.

SPEAKER_06 (32:22):
And what does it mean to me?
And so um, yeah, so the bleedingdisorder community taught me how
to use my voice, get invested inme, some leadership training,
helped me start to frame theissues that are important to me
as a woman and as a person withhemophilia.

(32:44):
And um, and then I was able totake that encouragement.
And uh there are a few women outthere who have continued to
support me in those moments ofdoubt, and there are a lot of
them when you're tired and youyou know, I I um I didn't get
into medical school the firsttime I tried.

(33:07):
So I had to take some time off,take some more classes and
reapply.
I didn't have the mostconfidence when I started.
I didn't have the mostconfidence when I graduated med
school and started myinternship, you know, and uh but
at every turn that the bleedingdisorders community was there

(33:27):
for me.

SPEAKER_05 (33:28):
Every time I faltered, they picked me up and
they keep doing that, you know,and they and I I come to
conferences and I remember whyI'm fighting, and it's it's okay
to take time for myself andfocus on myself.

SPEAKER_06 (33:44):
Um, but I still have the work to do.
Yeah.
And I'm still, you know, I'mstill gonna do it, and I still
it's still fair, you know, 20years into post-medical school
graduation, I'm still justgetting started.

SPEAKER_08 (34:00):
I always say that, you know, the best thing about
being diagnosed with a bleedingdisorder is the community that
comes along with it.
And that's right.
I just feel like so many peoplewho are not involved in the
community also are missing abig, big piece of the you know,
of what it's like to have asense of community.
Yeah, yeah.

(34:20):
And and some some people areable to sustain that, but
there's so much value.
I I love what you said aboutstarting to form a language.
There that can be so it soundssimple, but it can be
everything.
Because it's when we gathertogether and share our stories

(34:42):
and our experiences that webegin to frame a language, like
you said, around our experiencesand around what what's going on.
That you said, like the tinglyand the bubbly, like that stuff
may sound like what are youtalking about to most people.
But I think once we get togetherand we start talking about it,
we're like, oh my gosh, I reallyhave had that feeling a lot.

(35:05):
And I didn't know that if Ireally think back about it, that
was actually the very beginningof it turning into burning and
swelling and pressure and heat.
And oh my gosh, it turns into afully blown, you know,
metastasis bleed.
And it's in those things thatyou begin to get a certain
language for yourself that helpsyou to be able to advocate in
those emergency room moments orhelps you to be able to defend

(35:27):
yourself against an insurancedenial because you have been
equipped because of the languagethat it comes from
communicating.

SPEAKER_06 (35:34):
From communicating.
That's right.
And and that that that is, Ithink more than anything, the
superpower that I now have,because I know those words from
my body, the experience I havein my body.
And physicians are using thisnow.

(35:55):
They're talking about livedexperience experts.
So that the physicians who Ihave worked with and learned
with and struggled hard to gainthe knowledge that I have, for
them to start using words likethat is so hopeful.

(36:15):
And then, you know, one of thethings that we talked about in
the pre-meeting, you know, workwas, you know, it was maybe to
talk about, okay.
So one big focus of my work isas soon as I got into medical
school and I started to see whatit takes to acquire that
knowledge and to put off uh, youknow, like my other friends are,

(36:39):
you know, you know, I work 50hours a week.
And then I have to do continuingmedical education.
So I have to carve that out ofmy personal time.
Um, I have to, you know, I mean,I have to carve out of the time
the people who are calling me onthe evenings and weekends
because, you know, um, I have adoctor.
I don't have a life, you know.

(36:59):
I mean, they I they've got anissue and they need help right
now.

SPEAKER_00 (37:02):
Yeah.

SPEAKER_06 (37:02):
And, you know, and all the medical questions from
my friends and family membersthat don't have bleeding
disorder.
So, you know, it's like there'sa continual stream of
interruption to whatever I mightwant to do to restore my own
health.
Um so I guess in Arizona, youknow, I'm hoping to see as many

(37:25):
people as I can and help to seethem.
And um not that I want to putmyself out as some but I am an
access point to medicine.
That's what I see myself as.
The access point.
So how can I be a greater node?
How can I have greater reach?
That's where I'm going.

(37:45):
And how can I help teachpatients to be seen?

SPEAKER_02 (37:50):
Right?

SPEAKER_06 (37:51):
What are the right words to say?
What is the what what is thelanguage physicians use to speak
to each other?
What is the language physiciansuse to speak with insurers or
hospitals?
What does that look like?
How do we open up those roads?
What do I need to do as aprovider to help other providers

(38:13):
recognize those words, thosewords that mean a bleeding
disorder, those words that meana sickle cell crisis, so that
they're not dismissed as chaff,but actually as wheat that needs
to be collected and gleaned andsorted.
And so I've spent my focus sinceI've been in medical school when

(38:36):
I'm at patient conferences, andI did this at the Hope
Conference a couple years ago,and I've done it at the ladybugs
conferences and chessconferences.
How do we open up thatcommunication between the
patient and the physician?
And it it starts with keeping itiry.
What is your body telling you?

(38:57):
What is happening to you?
As um a trainee at theUniversity of Utah, there's this
one woman whose son had severehemophilia, and she had been
recognized by um the teammembers who were training me
that she had low factor levelsaround 20%, son had severe

(39:18):
hemophilia, she had you know,she had mild hemophilia, 20%
20%.
And um and they had offered herDD ABP as treatment because she
had 20% of factor levels and shedid respond, right?
Um so uh, but I don't know ifshe went far enough in

(39:39):
explaining to them, or maybethey didn't ask.
But we're in the, you know,we're in the clinic room
together, and you know, I'm afellow, so I've got a little bit
more time.
I've only got two or threepatients on my schedule, you
know, like so I have an hour.

SPEAKER_01 (39:55):
Yeah.

SPEAKER_06 (39:55):
I'm gonna spend as much time as it takes.
And then I'm anxious andnervous, so I can't ask the
questions right, and I gottafill out this whole HP, you
know?
And I'm like, and um and I haveADHD, right?
And I don't know that I havethis yet, but I just know that
I'm struggling and I feel likeI'm always behind.
And you know, my daughterdiagnosed me.

(40:17):
What?
Yes, she's like, Mom, I thinkyou have ADHD.
And I'm like, what are youtalking about?
That's for little boys that arerunning around like crazy.
That's not for me.
I went through medical school,right?
Like, I got that dream.

SPEAKER_02 (40:29):
Right, right, right, right.

SPEAKER_06 (40:29):
And it had nothing to do with girls.
There were no girls in there.
They didn't even talk aboutgirls in the training, just like
they didn't talk about girls.
Like women's health has beenignored just this whole time.
You know, it's like it's notjust hemophilia people, it's

(40:50):
it's women's health in general.

SPEAKER_01 (40:52):
Right.

SPEAKER_06 (40:52):
So, yeah, so that's a topic for another day.
But um, okay, so I'm talking tothis lady, and she's telling me
about uh that when she takesDDABP for her joint bleed, it
does help.
But then she's in bed the wholenext day because she gets a
massive headache.
And I was like, Well, did youtell him about the headaches?

(41:16):
No, I didn't tell him about theheadaches.
And I was like, Well, okay.
And I'm like, Well, how oftenare you taking the DDABP?
About every week.
I'm like, so your ankle feelsbetter, but then you spend a day
in bed because of the headache,and this happens every week.
Yeah.

(41:36):
Well, eventually it comes upthat she's used her son's
factor.
Because I she knows I have ableeding disorder and I'm
listening to her.
Right, right.
Right?
And I'm like, well, what happenswhen you use your son's factor?
And she's like, oh man, I didn'thave a headache and I felt so

(41:56):
much better.
It's so much more energy thenext day.
And I'm like, really?
Yeah, right.
And I I am keep in mind, I amnot even on regular factor
myself now.
So I, but I end up using itabout every 10 days because I
just can't handle the pain,right?
I actually going back to me, Iactually got in trouble during

(42:20):
my internship year, during myISU rotation call because I it
was so much energy for me to getup out of the chair.
It hurt so much.
And I'm used to this.
This is what I live with everyday.
I don't even think about this.
It was so much work for me thatit I would have to think about

(42:42):
getting up out of the chair togo in and like to rush to a coat
or whatever.
I was taking Tylenol every nightto sleep because my joints hurt
so bad.
And it turns out that that thatwas interfering with my ability
to think is the Tylenol everynight.
Am I just sensitive to it?
But if you take it every singlenight, then it's not good for
your body.

(43:03):
It's not good for your brain.
And I I realized when I wasusing factor that I could think
a lot better the next day if Ididn't have Tylenol the night
before.
And so, but this is years later,right?
I don't know this at the timethat I'm in my internship.
Uh they just know that I'm I'mnot hustling the way I should,
right?
And I don't know that it'sbecause my body hurts so much

(43:27):
and that this is impairing myability to be a physician.
I don't even know this, right?
Right.
Because if you don't have factorand you don't know what you're
missing, you don't know how badit can be.
So uh um, and just jumpingahead, um, my husband came with
me to one of my appointmentswith my physician, who is also

(43:50):
training me as a hematologist,and he's like, I think she needs
more factor than what she'sgetting.

SPEAKER_00 (43:55):
Wow.

SPEAKER_06 (43:56):
And my hematologist is like, well, she should maybe
get on three times a weekfactor.
Boom.
Or twice a week factor.
I'm thinking, I'm thinking.
Yes.
So my husband is the reason whyI started prophylaxis.

SPEAKER_08 (44:10):
Which is wild to think because you here you are,
the one living with bullshit.
I have to say, that makes mefeel so much better about my
lack of being able to explainstuff because I'm an explainer.
So I go through the motions ofexplain, but it took me a lot,
especially through my teenageyears, my young adult years,
like I would just want to go in,you know, just whatever they're

(44:33):
gonna do, and then get out.
And I didn't explain very much.
My my wife was the same way.
I get married, and she's like,Well, did you tell them about
this?
Did you tell them about that?
Did you tell them about this?
Did you tell them?
I'm like, Well, no, why would Ido that?
Exactly.
And so I, you know, but here youare in school learning about all
of this, and like you're inpractice and all these things.

SPEAKER_04 (44:50):
And it's like, I'm in my 30s.

SPEAKER_08 (44:53):
Yeah, you're still not putting two and two together
enough to be able to think, oh,I need to bring this up in the
clinic because that's soamazing.
Wow.

SPEAKER_06 (45:00):
Yeah.
So it was my husband.
Wow, because he could see howmuch better I felt.
And it and every dose of factorwas an agony because I was like,
oh, but it feels so good.
I just I want to feel better,you know?
And I know I feel better afterdose of factor.
Factor's magic.

SPEAKER_00 (45:16):
Yeah.

SPEAKER_06 (45:16):
You know, you feel good.
And I'd had factor in my fridgesince I was in my 20s, but it's
always like, you know, am Igoing to use this?
Am I going to use this?
You know, and uh that yeah, thatdecision to start prophylaxis,
um, it it really helped toliberate me from the day-to-day
achiness.

SPEAKER_00 (45:36):
Yeah.

SPEAKER_06 (45:36):
And, you know, and as factor products have gotten
better, then I realized likeevery little step where you
suddenly you're like, well, nowI thought that was a good
factor.
Yeah.
You know, and then you feel, andthen you started a newer
generation, and you're like,well, now that does feel a lot
better.
And then you get the nextgeneration, and you're like,

(45:58):
holy crap, my body stoppedfalling apart.
I don't feel worse every week.

SPEAKER_08 (46:05):
Yes.
You know, and there's beentraditionally a lot of
apprehension.
There was such a period of timewhere people thought that maybe
inhibitors were caused bychanging products often.
There's a whole generation ofpeople out there that are like,
it if it ain't broke, don't fixit.
Like that's right.
And that's that's beeninteresting to see how like now
that that has kind of beendebunked and we're now in this
new wave coming.

SPEAKER_06 (46:25):
We understand a little more.

SPEAKER_08 (46:27):
Yeah.
And and uh I have to tell youthis story because I I'm not
sure that you know about this,but that you made a huge change
in my life personally.
We were having uh, we were at adinner or something one time.
This is going back like maybe2016, 17, somewhere in there.
And um and and you told me onetime I was I was going through
some sort of you know diatribeabout how, you know, well,

(46:49):
factor doesn't help pain.
And some people think that it,you know, it's like an it, you
know, it doesn't really helpwith pain.
I mean, I I I'm gonna I'm gonnainfuse and then arrest, and then
eventually it'll get better.
But there's no real connectionbetween factor and pain.
And I don't remember all thereasons why we were having this
conversation, but you looked atme square in the eye in the
middle of that conversation andyou said, but it does.

(47:11):
And I was like, no, it doesn't.
And you were like, but doesn'tit?
It was this very somber.
I just, it was, you know howsometimes you're in those
conversations and it's like timeslows down and it's like a
slow-mo moment.
Yeah, I remember that.
I was in my I was in my flow andyou were interrupting my flow
and going, no, no, there'sthere's a connection.

(47:32):
And I was thinking, well, maybethere is.
And and from that moment, and wetalked more about it that night,
and I was thinking about howthere's this and your point was,
you said that if the cause ofthe pain is the is maybe a
microbleed or a bleed orinflammation, whatever the cause
of the, if the cause of thebleed is from you having, you

(47:53):
know, the not having enoughfactor, and then you give it
factor, that is going tointerrupt the pain cycle because
it cannot continue to fester ifit's being, if, if it's being
solved in the hemostasis.
So in that, in that moment, Ijust I still look back at that
conversation oftentimes, and I sit really, it actually began to
change a paradigm for me longterm of at the time I was only,

(48:16):
I think, correcting to maybelike um 50 or 60 percent, you
know, uh on my prophylaxisregimen.
And I will be the first to admitum uh that I wasn't the most
disciplined at staying exactlyon track.
I'm like three times a week, andthen I'm like, oh well, maybe a
little bit, you know, I'll fudgea day because I'm going to the

(48:36):
beach with the kids, and thenI'll get it the next day or
whatever, you know.
And uh, and so in the process ofthat, you know, there's this
sense of of like, I just startedto, even in that conversation, I
started to make the connection.
Wait a minute, maybe there is aconnection between getting a
treatment and it it reducingpain.
Not that it, not that it's thesame thing as like a Tylenol or

(48:58):
whatever, but it's but it is theit there's it's going to address
the actual root problem, andthat in correlation is going to
affect the pain.
And uh it made me start thinkingdifferently about how to be
consistent and disciplined, andit improved my treatment
regimen.
I ended up having conversationswith my doctor, and we started
going through, you know, and sothen we changed it from 60% to

(49:19):
100% correction.
Then from that, we started to,you know, modify the frequencies
and look at PK study results.
It made me start to likeinvestigate something that I had
not even considered.
And it brought me to a placewhere I could start to have
collaborative conversations withmy physician in the clinic
setting.
And I think when I talk topeople in the community, it's
it's it's so commonplace thatyou have an you have a let's say

(49:44):
you have an annual visit withyour physician, which I know
some people have more higherfrequency than that, which I'm
thankful for.
But you you're really justyou're lucky if you get 30
minutes, you know, to talk of uhto review everything that's
occurred in the last year.

SPEAKER_07 (50:00):
Yeah.

SPEAKER_08 (50:00):
And so you're prioritizing what you're gonna
talk about.
And so you end up only talkingabout the really large things,
and sometimes they say, Well,you should try this or that, but
there's not even enough time toexplain why.
This is why self-education is socritical for all of us.

SPEAKER_07 (50:14):
Yeah.

SPEAKER_08 (50:14):
But it is in those connecting points.
I think we were at a national,you know, uh community meeting,
and it was like the fact that wewere there to have that
conversation, and you were ableto say, No, I I think there's a
connection.
And, you know, are you like wellconvinced that it was definitely
a connection?
And I was the one that was like,no, I was skeptical.
But it was it is those thosetypes of things that really can

(50:35):
change the trajectory.
And I know I've lived with a lotless pain because of that
conversation.
And so your ability to get to aplace of like having that
freedom in your own discovery isalso helping, you know, it's
helping me, it's helping others.
It's kind of so it's not justthat the medicine is advancing,
it's not just that there's more,you know, clinic visits, even.

(50:58):
It's sometimes it's a theproblem is between our own two
ears.

SPEAKER_01 (51:01):
And this is very often the problem.

SPEAKER_08 (51:05):
And so I'm just I'm grateful for for both.
I'm grateful for the advancementof medicine, and I'm also
grateful for the conversationsand and these moments because
it's like it really can belife-changing if you embrace it,
you know.
And for me, that whole painconversation was really just I
just didn't I just always quitea bit too.

SPEAKER_06 (51:22):
That's where it is, though, right?
Like, oh, we have all of thesebig fancy things.
We have telescopes now that canpeer into the origins of the
universe.
You know, we we have AI that cando a lot of hard thinking for
us.
But at the end of the day, whatwe have here on planet earth are
relationships.

SPEAKER_01 (51:41):
That's right.

SPEAKER_06 (51:41):
We have personal relationships, and this is how
everything gets done.
Everything gets done because weknow somebody, and somebody knew
us.
And, you know, um the the bestoutcomes for patients are the
ones in which the provider callsme or picks up the phone when I

(52:05):
call.
And I can talk to them and say,Well, you know, this person is
anxious because they're hurting.
And so when you talk to them,please recognize that that they
are not crazy, that they arejust anxious because they have
PTSD from the last 12 times theywere in the ER and nobody
listened to them and they gotworse.

(52:26):
You know, and so having, youknow, having courage, internal
courage to open up your voiceand to allow it to be heard.
Even if somebody shoots youdown, you know, that internal
courage, that that's what we inthe bleeding disorder community
can can help foster.

(52:48):
And that's what happens when youcome to a dis uh any any of the
events to gain solidarity and toeducation.

SPEAKER_08 (52:59):
Yeah, and it's interesting, like even in your
own story about your husbandbringing up, you know, here you
have the two most scientificminds in the room, and your
husband, who is probably theleast medically trained, goes,
I've been observing this.
This is definitely, I think sheneeds more factor.
And that becomes the point ofchange.

SPEAKER_06 (53:16):
It's like our support system sometimes, we can
also, you know, yeah, let's notunderestimate our our uh
partners, yeah, right?
Whatever gender, whatever role.
And I, you know, I honestly Ididn't think I was gonna be a
worthy partner because of thehemophilia.
You know, I mean, you're as awoman, if you can't have babies,

(53:40):
if you don't have a healthybody, it doesn't really matter
what you look like on theoutside, okay?
And I mean, I'm notunattractive, but you know, not
knowing when your body is gonnajust freaking totally crap out
on you at any moment, right?

(54:02):
You can be perfectly happy oneminute and absolutely fine.
And the next minute, all right,we're done.

SPEAKER_05 (54:08):
Right, right?

SPEAKER_06 (54:09):
Like it's it, that's it.
I'm you know, I uh uh I'm I'm onthe bed for the day, right?
You're in charge of everythingbecause I can't move.
I have to sit still.
And um, I mean, I didn't do avery good job of sitting still
for a long time, so you know, mybody is not it looks great on
the outside, but it does notfeel good on the inside.

SPEAKER_08 (54:32):
Um, but um in that exchange with your being
vulnerable.
Leaning on each other, too.
Yeah, he probably stepped up inways that he didn't expect to be
able to see, you know, but hefound strength in himself, I
would imagine, too.
Yeah.

SPEAKER_06 (54:49):
That um vulnerability, um, which is
inevitable and it doesn't matterthe couple, but with hemophilia,
it can really connect you withsomebody else in a profound way
when it can be shared.
And you can't I mean, let's behonest, with your bleeding

(55:13):
disorder family, there's adifferent connection, but
they're still on the outside,they're not in the day-to-day
with you.
Alex's biggest thing, you know.
I I um Isaac was three uh whenwe when we moved in with Alex,
and I was like, look, I know wehave this connection, you know,
we love each other deeply, butit is not gonna work unless you

(55:36):
can learn to infuse Isaacbecause you will have to.
I won't be here and you'll haveto do it, you know.
And I knew what the timecommitment was as a physician
because I'd already been doingit, and and I I was like, you
you're gonna have to do this.
And he's like, I he's got aneedle phobia.
And he was like, No way I can dothis.

(55:58):
And I'm like, there's not achoice, this is it.
You know, I'm like, with mecomes a baggage.

SPEAKER_08 (56:06):
A lot of people talk about wedding rings, but in
hemophilia we talk aboutneedles.

SPEAKER_06 (56:10):
We're talking about needles, you know, and I gotta
tell you, he people surpriseyou.
You know, you you think humanityis really horrible, and it can
be, but people can surprise you.
And we get to see that a lot, Ithink.

SPEAKER_08 (56:25):
So he embraced that and he was like, Yeah, well, he
you know, he he did, yeah, andhe did it for me.

SPEAKER_06 (56:32):
I was worth that, you know.
And um, well, I would say, Imean, getting my medical degree
and being accepted as a doctorand not just a person with a
bleeding disorder, that was athat has been great for my ego.
But my relationship with him,and he's been, you know, always
kind to me.
And I I don't think that that'sthat certainly hadn't been true

(56:56):
in previous relationships I had.
And so I am grateful that itstill exists on the planet.
Yeah, that is pretty awesome.
And I know it doesn't happen foreveryone, and so again, I'm
blessed and lucky.
I've got great kids, I get totalk to people all day and help
them live better lives and withtheir bodies, get to know their

(57:20):
bodies better, find better waysto care for their bodies.
I get to do that for my job, andI am a lucky, lucky girl.
Hemophilia sucks, but togetherit's less bad.

SPEAKER_08 (57:35):
Yeah, the interesting thing about it's
like, you know, the unsung heroin the hemophilia story is the
caregiver, right?
It's always the hemophilia.

SPEAKER_04 (57:42):
It is, it's always the caregiver.

SPEAKER_08 (57:44):
And um, you know, I think that uh, you know, it's
interesting the the enduranceand the fortitude that comes
from having getting, you know,they say like you know, you've
heard quotes from like MichaelJordan and these elite athletes,
right?
It's like, you know, they say,well, you won this many times,
right?
And he's like, Yeah, yeah, butbut what you don't see is the
10,000 games that I lost orwhatever.

(58:05):
You know, it's like, yeah, I wona thousand, but I I lost 10,000,
you know, and it's you know,like in those quotes of those
elite athletes, a lot of timesthey're saying, like, it's it's
really that you just it's allabout loving the practice and
learning how to embrace thechallenge of getting up to bat
every single day over and overand over and over again.
And so the people that have hadmore opportunities to get up to

(58:25):
bat more often, usually the oneswho seem to be like the rock
stars, but it's really becausethey had more practice.
And I think with a bleedingdisorder, you have the
opportunity for this emotionalinterruption, depression,
anxiety, pain.
You get up to bat at like life'shardest challenges.
You know, romantic relationshipsbeing difficult because of this

(58:47):
extra additional burden thatcame into it.
It's like you get up to bat forthat so much more frequently
than maybe the average everydayperson might.
But for those who embrace it,there's something that can be so
much, I believe, even more sweetabout those things because
you've had an opportunity to bereally tested by those fires
that give you that fortitude tobe able to continue to press on

(59:07):
when maybe, maybe other peoplein the rest of the world don't
always have the fortitude topress on.
And and so there, there is abeauty for mashes story, I
think, from from a lot of folksthat feel, you know, that have
been through that that thatpressure.
I want to talk a little bit.
You you mentioned Isaac.
So uh, you know, we haven'treally talked about the
difference between being aperson living with versus being

(59:30):
a parent of.
And I I I mean, if there was a,you know, I I have said about
watching my girls go throughtheir their challenges that, you
know, I people ask sometimes, isit harder to be the the patient
or the parent?
And I feel like it's been harderto be a parent because at least
if I can go through the painmyself, I know what I'm dealing
with.
But if I'm watching them,there's so many they they don't

(59:52):
have the language yet, orthey're learning, or they're
just trying to figure it out, orthey're feeling depressed and
insecure about their ownperspective.
Personal, you know, situation.
So, you know, tell me a littlebit about what was it like
having Isaac, and then all of asudden now you're the parent.
You got to be the one in chargeand trying to walk through that
journey with him.
What was that like?

SPEAKER_06 (01:00:13):
Like, how many hours do we have?
Yeah, as long as you want.
I know.
It's uh um how to put it in anutshell.
Well, okay, so we I'm gonna stepback just a bit, right?
So when I was in the fifthgrade, in the back of the room,
there were these first aid umbooks.

(01:00:34):
And I was like, hey, Mr.
Anderson, when are we gonna?
You know how you go through thedifferent books on the shelves?
I was like, when are we gonnalook at these books?
You know, and and he's like,they were from the 50s, right?
They were these old first aidbooks written in the 50s, and
they were just there.
And he's like, Oh, we're notgonna go through those.
And I was like, Well, can I readthem?

(01:00:56):
And he's like, sure.
So there were a coupledifferent, you know, there were
multiple copies, but there werea couple different ones.
And so I brought all those homeone by one and read them.
And I I think I wanted then tobe a physician.
I'm pretty sure I got it into myhead then.
And I didn't know until I wasapplying to medical school, and
I I asked my parents' support.

(01:01:17):
I was like, look, I'm gonna goto medical school.
I know this is gonna be hard,and so I'm gonna do this, but I
need your support.
And I made them this spaghettidinner because that's because I
was so poor.
But you know, they said, yes,Danielle, if you get into
medical school, we'll supportyou, we'll help you, whatever
that means.
And so um, so I was like, great,okay, awesome.

(01:01:38):
Yeah.
And um and my family did supportme.
Um, they they my mom would comeand stay with me and help take
care of the kids during, youknow, during medical school when
I had exams so that I couldfocus on exams rather than
taking care of my children.
Because I had Serena, she wasnine months old when I started
medical school.

(01:01:59):
So um I learned though that somy my dad was um my dad had he
was the third wife of mygrandfather.
So my grandfather was born inthe 1800s.

SPEAKER_03 (01:02:11):
Wow.

SPEAKER_06 (01:02:12):
Yes, and um his first wife died, and he had five
children um with that wife, um,and they had grown up and gone.
His second wife divorced him,took all of his land.

SPEAKER_03 (01:02:24):
Oh my god.

SPEAKER_06 (01:02:24):
And um, her father was a banker, and then uh the
third wife was um my dad's mom.
Okay, and um, so she was much,much younger than my
grandfather.
My grandfather was in his 60swhen my dad was born.

SPEAKER_01 (01:02:41):
Wow.

SPEAKER_06 (01:02:42):
Yeah.
So I mean that's how it was likein those days.
So um so my his half sibling umwas there were physicians in his
family.
Actually, they're uh their groupof physician gynecologists,

(01:03:04):
actually.
So I was in in uh I was in myhematology fellowship, and one
of the sons of he so my um mygrandfather and his
great-grandfather were brothers,okay, right?
So that's how we were related.
And I like someone came to findthat Dr.
Nance and they found me, and I'mlike, no, that's not me.
And he, you know, and I'm like,hey, we're like cousins or

(01:03:26):
something.
And he's like, are you sure?
And I'm like, yeah, you know,and so anyway, so that was kind
of fun.
That was kind of a fun, funstory.
But when I decided to become adoctor, I actually didn't know
that I came from a family ofphysicians.
And my great-grandmother hadbeen a nurse, and she organized
a big nursing program innorthern Utah and helped
establish that up there.

(01:03:47):
So I have medical people in myfamily.
That's, you know, not a bigstretch, but um still I was a
woman in Utah, and women weren'tusually slated for careers, let
alone physician.
Um, so I didn't have a ton ofsupport from the community.

(01:04:09):
And then when I got pregnantwith Serena, because I didn't
make it into med school thefirst time I applied, so I
decided I was gonna get marriedand have kids.
Good idea, but not the end ofthe road for me.
So um I did get pregnant againwith Serena while I was applying
the second time.
And I um interviewed six monthspregnant, but I had already been
pretty athletic, so you couldn'treally tell with the zoo coat

(01:04:32):
on.
And then I delayed for a year.
So she was nine months when Istarted med school.

SPEAKER_03 (01:04:36):
Oh, wow.

SPEAKER_06 (01:04:36):
And so I was kind of split between my intellectual
needs and the biological needsof having a baby.
And that was a challenge.

SPEAKER_03 (01:04:49):
Not bad.

SPEAKER_06 (01:04:49):
It was a challenge, but um, then I realized when I
started watching those daycarewomen and how they would play
with the babies versus how I wasdealing with my child, and I I
suddenly realized that noteveryone can do what I do.
Wow, and I cannot do whateveryone else can do.

(01:05:11):
I'm not great with earlychildhood.
That's funny.
But I'm great with adults, soit's good to read that.
Like, and that was a liberationfor me.
So can I, you know, can I spendthat emotional energy in the
clinic versus in in the youknow, in the play playroom and
on the floor with Legos.

(01:05:31):
And I do love Legos.
There's you know, yeah, there'sno shortage of Legos in my
house.
Or dogs.
Those two.
And a lot of books.
That's and a lot of puzzles.
So but we have we have a lot ofplaytime too.
But we also, you know, uh butmedicine, yeah.
Being able to interpret what'sgoing on in my body and the

(01:05:54):
sensations and being able totell, you know, what's
life-threatening and what isn't.
Um, that has been really goodfor my mental health.
So, you know, because you a lotof things go on in the body and
you know, and not and when youdon't know what the anatomy is,
when you don't know what yourtolerance is, you know, and I
think in the bleeding disordercommunity, one of the most

(01:06:16):
powerful things that we havebeen given are those PK studies.
Right?
Because that gives us an idea ofwhen is the factor protecting
us, right?
And when is it wearing off.

SPEAKER_01 (01:06:27):
Right.

SPEAKER_06 (01:06:28):
And what tolerance do we have to do what we need to
do or what we want to do.
You know, and you know, so it'slike it's the weekend, you're
going out of town with yourgirlfriend.
Are you gonna factor it beforeyou go?
Yes, you are, because you don'twant to be slowed down if
something fun happens.

SPEAKER_02 (01:06:44):
Right.

SPEAKER_06 (01:06:45):
Or if something that you didn'texpect happens, then you've got
a window.

SPEAKER_02 (01:06:50):
Yeah.

SPEAKER_06 (01:06:50):
You've got a window to get that treated.
And, you know, and so knowingthose types of things and
bringing that up in the clinic,you know, I think has helped
open up a lot of doors.
And so when I'm with patientsand I'm helping them like learn
about their bodies and interpretthe signals of their bodies, and

(01:07:13):
then practicing that type ofconversation together, well,
what are you gonna do?
Like, you know, oh, you're goingon a three-day camping trip.
Okay.
And are you gonna just take yourfactor with or are you gonna
infuse before you go and take adose, you know, and and having
that opportunity to, you know,to have a conversation about how

(01:07:36):
to use their treatment to thebest ability?
Um, I've had a lot ofconversations with men with uh
moderate hemophilia.
Oh, I haven't needed factorbefore.
Oh, but you're not going to thegym anymore.
Why is that?
Well, it hurts too much.
And I'm like, oh, yeah.

(01:07:56):
Well, why don't you just, youknow, this factor, especially
the hemophilia B patients,right?
I'm like, you don't have anyexcuse.
Once a week, once every twoweeks.
I'm like, come on.
Yeah, right, right.
It's no big deal.
Right.
Let's protect your body becauseyou are only 40.

SPEAKER_01 (01:08:13):
Right.

SPEAKER_06 (01:08:14):
You know, I'm like, you are not going to be able to
move in 10 more years, you know.
I'm like, if you can't keepmoving now.
And so it's, you know, I mean,it is it is tricky, right, to
move from, you know, like thistransition for me, being a
person with hemophilia, being aprovider, being a mother, this

(01:08:36):
is a fluid state for me.
And it happens like all daythrough the day.
So I can't really talk about anyone of those aspects, right?
Because it's just your wholelife.
It's my whole life.
Actually, um, one of the thingsI like to talk about a little

(01:08:57):
bit, I need to talk about is thefact that there's no holiday
from hemophilia.
You can't go on vacation fromhemophilia, right?
And and so, you know, so I knowthis.
So the way I cope with it is tojust do it really hard all the
time.
And so then if I'm reading afantasy book or if I um I picked

(01:09:18):
up pottery this spring, I don'tknow why I decided I need to do
that, but here's the great thingabout pottery is that you
actually can't think aboutanything.

SPEAKER_03 (01:09:27):
Oh wow.

SPEAKER_06 (01:09:28):
You actually can't think about, you can't let your
mind rift.
If you do, the clay on thatwheel is gone, right?
So you actually have to only useyour hands and feel the clay and
feel your body in the clay.

SPEAKER_08 (01:09:42):
Present in that moment, yeah.

SPEAKER_06 (01:09:44):
Yeah.
There's no thinking aboutanything else.
As soon as I know my mind iswandered, I pull my hands off
the clay.
Yeah.
And I let my mind wander for abit and I take a drink of
whatever my beverage is, andthen I decide if I if I'm done
doing clay for the day.
So so there, so there aremoments for me when I do not
have hemophilia.
But but um by and large, youknow, that um the way that I

(01:10:09):
cope with hemophilia is totackle it.

SPEAKER_08 (01:10:12):
Yeah.
So so going back to parenting,you know, you have a son that
has hemophilia, and in theprocess of this, you're going,
you've got all this, you know,experience, lived experience,
life experience of your own.
And you've got now all thismedical knowledge, and you're
trying to learn through all ofthese things, and his journey's

(01:10:35):
very different than yourjourney.

SPEAKER_06 (01:10:37):
Oh man, it's so different.

SPEAKER_08 (01:10:39):
And so some things are way easier in a sense,
probably, but some things arelike he's he's a different
person than you are.
So he doesn't he doesn't thinkabout things in the same way
that you you do.
The things that interest youdon't aren't are gonna interest
him in the same way.
So in terms of being a parentand learning how to raise a son

(01:11:00):
with hemophilia and and all ofthe differences, like you can
you can tell I keep avoidingthis, right?
Like I'm like shut up.
I think it's important.
Yeah, we it's important.

SPEAKER_06 (01:11:12):
I mean, okay, so the one thing that that comes to
mind is, you know, is is knowinghow much I wanted to have
children, right?
Like always wanted to, alwayswanted to, always wanted to,
terrified of it, and then wasreally, really, really angry
about the um what do how do Isay this?

(01:11:36):
I I'm just gonna have to bereally blunt about it, but like
the disapproval in the communityabout people with hemophilia
having children, and I'm notsure exactly where that came
from.
Is some of it came from themedical community because it's
so bad and we didn't havetreatment before.
Um, but I think a lot of itcomes from culturally the stigma

(01:11:58):
of disease, period.
So it just comes from allangles, but um, you know, I uh I
knew there was at least a 50-50chance that I would pass the
hemophilio gene on to my child,and I I mean, quite frankly, did
not have 60 grand to do any typeof treatment um to select

(01:12:25):
against the hemophilagene.
And then also um egg harvest isreally risky and even then I
didn't, you know, I I didn't Ididn't want to risk that.
Um so uh, you know, so I'm like,well, we'll just see what
happens.

(01:12:45):
Is this a great way to do it?
Yeah, it's the way it gets done.
Right.
It's the way it gets done mostof the time.

SPEAKER_02 (01:12:54):
Right.

SPEAKER_06 (01:12:55):
And and so, you know, with Serena, I was
pregnant before I went tomedical school.
And I remember, you know, beingpregnant with my OB, and I had
like this long list ofquestions, and I was so anxious,
and I'm like, what about that?
But I see, what about this?
Blah, blah, blah.
And um uh, and my doctor was soloving, and she just she looked

(01:13:15):
at me and she's like, It'll beokay.
And that, and you know, and wedidn't even go through any of
the questions.
She's like, What would it beokay?
You know, I I mean I'm likeeight weeks pregnant or 12 weeks
pregnant or something, and I'mfreaking out.
And um, and then with you know,with when I I wanted to have the
two together, I wanted to havemore than one because it just

(01:13:35):
seems sad to have an only child,right?
And they need a buddy.
They need a buddy, and andsometimes there isn't an
opportunity to get a buddy, youknow, and that's okay, then
that's fine.
But you know, uh I I had hopedfor that, and I but I was
already in medical school and myprevious husband had had a
health condition, so um we knewit would be harder for him to,

(01:14:00):
you know, c for me to conceivethrough him, and it seemed like
Serena was a miracle anyway, andshe was so perfect, and I wanted
her so much.
And um and then when Isaacshowed up, and uh I wasn't
expecting that, but it was a itwas great news, it was good

(01:14:22):
news.
Um, but I was a third-yearmedical student, so it was
harder to, you know, to figureout how that was gonna work.
But um I got that, you know, theultrasound that it was in the
right place.
And that, you know, that was agreat because I, you know, I was
like, oh my gosh, if I have anectopic pregnancy, I'm gonna
die, you know, like all of theseterrible fears.

(01:14:44):
So there was the the risk ofpassing it on.
There was the burden of peoplewith who are uh who have a
hemophilia gene, there's allthis pressure of whether or not
they should have kids.
And and honestly, kids happenwhen they happen.
You know, a lot of thatbiological drive isn't even up
to our brains.
Right.
Like our cognitive self, it'slike overridden by our

(01:15:08):
biological drives.
And so, like, we're not evenresponsible for that.
And you think that you are, youknow, like you have control over
all of the decisions that youmake.
And there's a partnership withour body, you know, it's not
it's not all up to our cognitiveselves to figure it out.

SPEAKER_08 (01:15:27):
It's not the same thing as like choosing where you
want to go for vacation.
Like, I think people make itsometimes try to oversimplify
the process, and you're like,no, it's actually something that
the need to have children whenit's present is overwhelming,
right?

SPEAKER_00 (01:15:41):
Wow.

SPEAKER_06 (01:15:42):
And that doesn't come from anything other than
our DNA.
And so as I really came tounderstand this more later after
I had Isaac, but reallyunderstanding how genes work and
a little bit more about those uhthose, you know, those built-in
things, and I'm like understandmy choices better.

(01:16:03):
But you know, at the time, I'mlike, well, pretty normal,
stupid person that's like, well,it'll be okay.
And it was, but it takes a lotof energy for it to be okay.
Um yeah.
So that's it.
You just have to work at it andfigure it out, right?
But um uh so when you found outthat it was gonna be a boy, boy.

(01:16:25):
I just started crying.
Yeah, I was like, okay, well,this kid has hemophilia.
I knew that.
Wow.
And um, I didn't risk an amniobecause I'm like, well, I I
don't want to injure the kid,right?
And I don't want to injuremyself, and it's a high risk
anyway.
And I wasn't on regular factorthen.
Um, so uh yeah, so Isaac wasborn and it was traumatic

(01:16:46):
because uh it was traumatic.
I'm gonna leave it there.
And uh and then they've given menarcotics instead of an
epidural, and they and justright before he was delivered,
so he was quiet at delivery.
And um uh, you know, and andthen uh they did the cord blood,
the PTT of the cord blood, andthey're like, oh, 83 seconds,

(01:17:08):
and I was like, Oh, he hashemophilia, you know, and I was
like, you know, I think I waseven on the phone with my dad,
you know, he's born and he hashemophilia, you know, and I'm
sobbing.
And um, you know, and uh thepediatrician was just, you know,
because I met with her beforeand I was in the children's
hospital, and I walked in thedoors and I'm sobbing, and you

(01:17:29):
know, and it was just like oneof those things because yeah, I
still can't go to the children'shospitals.
I'm like, that is not my jam.
But um uh she was, you know, shewas really good.
And it was that woman who heldmy hand and she's like, it's
gonna be okay.
And I I was more paranoid thananybody else.

(01:17:50):
And so Isaac would only ever gethurt when I was around, right?
And I don't know what was goingon when nobody else was around
because he was always fine.
It was only when I was home thathe would get hurt, right?
And so I'm like, is this justme?
You know, am I just beingparanoid?
So uh I mean that wasn'texclusively, but you know, very

(01:18:14):
often it was mostly me beinghyper-vigilant.
And um, I I did ask forantidepressants right after he
was born because I knew I neededa lot, and I had to revisit a
lot of emotional trauma after hewas born.
And so um that was a hard time.

SPEAKER_05 (01:18:36):
Yeah, but he's beautiful, yeah, and he belongs
here, and he is amazing.
He's amazing.
He's amazing, and I told himthat.
I said I knew you could havethis, but I really wanted to,
and that was more important thanhemophilia.

(01:18:56):
And so he, you know, we have hada lot of conversations, he
doesn't like hemophilia, and hesays things to me like, I'm glad
you're not alone, mom.
I'm like, oh man, that's thebest.
You know, so yeah, we getthrough it together and we do
infusions together, and he'llsometimes do mine and I
sometimes do his, and he's gonnabe a physical therapist.

SPEAKER_06 (01:19:19):
That's his new toys and job.
So that's awesome.
Yeah, so I'm um uh I'm reallyexcited for him because uh more
than anything I want to takecare of his body.
Yeah, because taking care ofyour body means that you're not
in a lot of pain or his lunchpain, right?

SPEAKER_08 (01:19:34):
So yeah, and and that journey of like just just
being so I mean, in so manyways, while you while you didn't
want that hurt for him and that,you know, that that struggle for
him, yeah, there had to be somesense of like like you were
prepared to also walk it outfrom a from a technical point of

(01:19:57):
view too.
Like you had to feel a littlebit equipped to be able to say,
okay, we're gonna do this.
And at some point there had tobe a place where you're like,
all right, we got this, right?
When he was little, I mean, didyou have a did you have like a a
point where you're like, yeah,we're just gonna for sure.

SPEAKER_06 (01:20:13):
But then you have a newborn baby whose forearm is
the size of your husband's indexfinger.
And you're like, wow, I'msupposed to find a vein to
infuse this thing.
Yeah, you know, and he was bornin 2004, and if you remember,
they weren't really startingprophylaxis in this country

(01:20:33):
until like 2008.
That's when that paper waspublished.
So, and I'm like, I knew thestudies that had been done in
Europe that they were puttingbabies on prophylaxis, and I'm
like, I want Isaac to haveprophylaxis, and they're like,
Okay, we can start with once aweek, you know?

(01:20:56):
And um, so yeah, so you know, Imean there were there were you
know hurdles, there were thingsand lots of conversations, and
as a parent, you have to hardenyour heart against their tears
because you know they have tohave that factor.

(01:21:19):
Yeah, and when you havehemophilia and you know what it
feels like to sit on that couchand not be able to move for a
week and not be able to sleepfor three days because you
cannot get away from that pain.
And you're like, that is notgonna happen, you know, it's not
gonna happen.

SPEAKER_08 (01:21:39):
And so, yeah, there was a bit, there was like yeah,
there was vigilance that you'rejust like, this is But there was
that steel rod that was notflexible when it came to this.

SPEAKER_06 (01:21:54):
You want to go over to to sleep over at your
friend's house?
This is what we're doing.
He you we sat in the car onetime for like maybe three hours
because Isaac didn't want to gethis infusion.
All four of us, Alex, Serena,me, Isaac.
The numbing cream had worn off.

SPEAKER_07 (01:22:15):
Oh my gosh.

SPEAKER_06 (01:22:17):
And he was terrified of the needle and he didn't want
it.
And wow, you know, and and he'slike maybe six at this six,
seven.
So you can't force him and youcan't hold him down.
Right.
He has to, he, he has to relent.

SPEAKER_01 (01:22:32):
Yeah, right?
Right.

SPEAKER_06 (01:22:34):
He has to give permission, right?

SPEAKER_01 (01:22:36):
Right.

SPEAKER_06 (01:22:36):
So yeah, that was a long day.
And then um he realized thathe'd had infusions there so many
times it didn't hurt anymore.
Oh man, that was a great day,right?
And then we didn't have to dothe whole messy emlet cream
thing anymore.

SPEAKER_08 (01:22:55):
Yeah.

SPEAKER_06 (01:22:56):
But oh boy.

SPEAKER_08 (01:22:58):
So many.
Yeah, so anyway, so we shouldtake a break.
Yeah, question for you though.
I get this all the time.
Is it harder to be the patientor the parent?

SPEAKER_06 (01:23:08):
It's harder to be the patient for me.
Because I'm living in my bodyand he's responsible for his
body now.

SPEAKER_07 (01:23:17):
Yeah, yeah.

SPEAKER_06 (01:23:19):
Yeah, I I do think that Because his experience is
not mine.
Okay.

SPEAKER_07 (01:23:24):
Yeah, yeah.

SPEAKER_06 (01:23:25):
I was alone and nobody believed me.

unknown (01:23:28):
Yeah.

SPEAKER_06 (01:23:29):
And I didn't have factor.
So yeah, I feel bad for myyounger self.
And I feel bad for thosephysicians who didn't know what
to do to treat me.
And I feel bad for my parents.
I feel bad for my older brotherand sister and my younger
brothers because they watched mesuffer and they couldn't help.
And they didn't even know whatwas wrong with me.
But they were still helpless andcouldn't fix that.

(01:23:52):
My older brother talked to meabout how angry he was about
that.
And I had never thought about itfrom his perspective until he
brought that up, you know?
And how it affects the entirefamily.

SPEAKER_08 (01:24:04):
When you see today, looking at the landscape of how
patients are being treated inhemophilia broadly today, and
you see how there's still apretty big gap between how men
are treated versus how women aretreated generically speaking.
Do you feel like that there'sstill some uh lack of urgency

(01:24:25):
and lack of you you feel likesome of what you experience is
still going on today in theclinic setting as it pertains to
women with bleeding disorders?

SPEAKER_06 (01:24:33):
Oh my goodness.
You do not even need to answerask that question.
That's why we're here.

SPEAKER_01 (01:24:39):
Right.

SPEAKER_06 (01:24:40):
Oh, let's see.
So gosh.
Uh, you know, I've done a lot ofthinking about how to what is
still happening and how can wefix it.
So part of it is trainingphysicians to think about

(01:25:00):
symptoms.
And but I, you know, again, itdoes kind of confuse me a little
bit, right?
Because the physicians who'vecared for me when I've talked to
them about what's happening tome, when I actually tell them
they really want to help, youknow, and so like could I have

(01:25:24):
had prophylaxis sooner?
Yeah, I'm sure I could have.
I could have asked for it.
Why didn't I?
You know, why did it take myhusband to ask for me?
Why didn't I?
You know, and so I don't knowthe answer to that.
I don't know if I didn't feellike I was worthy enough or
because I didn't have low enoughfactor levels.

(01:25:45):
Um, but you know, and and also Ido know why some physicians
don't offer factor, and that'sbecause it's really freaking
hard to give factor to somewomen, right?
Their veins are tiny, they'rehard to cannulate.
You, you know, you little yougot little boys with their
skinny little arms, you can seethose veins, right?
They're right there in front ofyou.
But a woman has 14 or more bodyfat than men, the veins are

(01:26:09):
harder to see, they aren't asbig vascular-wise.
It's a big challenge to train a30-year-old woman how to get a
factor infusion.
So there are logistics togetting factor into women, okay?
These are things I didn'texpect.
And probably other people whocame before me realize how
difficult.
And then, of course, you know, Iinject myself with factors, so

(01:26:32):
it's not that big of a deal.
You get used to it, right?
I know this, but if mostphysicians do not have that same
experience, you know, they alsodon't know, like so.
I knew a guy who was a heroinaddict, right?
And this what you know I don'tI've had delauded, so I've had

(01:26:55):
an IV push-up delauded.
I know what that feels like,right?
That's that's medical gradeheroin.
So fentanyl, morphine, all ofthat is medical grade heroin,
right?
I mean, that's what that is.
So all narcotics are theequivalent of hero.
If you ask me, do I want a doseof factor or do I want a dose of

(01:27:16):
delauded, sign me up there forthe factor, right?
I know that's gonna make thatpain go away.
Yeah, delauded doesn't.
So sickle cell anemia, right?
Patient comes into the hospital,they get delauded, they get
their pain medication, theirpain goes away.
But the sickle cell crisisdoesn't.
But but actually nobody talkedto them about the delauded did

(01:27:42):
not change the sickle cell, itonly covered up the pain.
It made you not care about whatwas happening in your body until
it solved itself, it resolveditself with rest and IV
antibiotics and fluids, and youknow what I'm saying?
Like the delauded did not stopthe sickle cell.
And actually, some sickle cellpatients are like you can see

(01:28:06):
the dawning of understanding intheir eyes when they realize
that they are not connected.
The delauded did not stop thesickle cell crisis.
And so patients are coming intothe ER thinking the delauded is
gonna stop that pain crisis.
And the ER doc knows that that'snot the case.
That, you know, it's not gonnado anything for the sickle cell

(01:28:30):
crisis, it's just gonna stop thepain.
But there's a disconnect betweenwhat the physician knows and
what the patient knows.
And this is the big problembetween what patients experience
and what physicians experience.
And we talk a lot more now aboutthe patient experience, and
there's even training going onat Banner, mandatory training,

(01:28:52):
to help providers improve thephysics the patient experience.
And that means that a physicianreflects what the patient said.
So the patient is sure thephysician heard them.
The physician heard them,processed it, and already
created a treatment plan beforethey finished their sentence.

(01:29:14):
Right.
Because we've heard this fromlike how many other patients?
And so but it doesn't matterwhat the physician knows, it
only matters what the personexperiences.

SPEAKER_08 (01:29:25):
Interesting.

SPEAKER_06 (01:29:26):
And so there has to be a multi-pronged approach
where the physician is trainedto recognize the symptom,
trained to recognize thelanguage the patient is using,
because it might be waydifferent than what, right?
And then also, like a lot ofwomen will go in and say, but
I'm having this pain to theirphysician.

(01:29:46):
And they think they're having ableed, but they don't know.
And um and the physician's like,well, that's well, you can
possibly be having a bleedbecause your factor levels are
30%.
So they just dismiss that painout of hand as being an actual.
Bleed.
But we now know that you canhave uh leakiness of blood

(01:30:09):
vessels when factor levels arelow.
And we used to call thesemicrobleeds, but they aren't
microbleeds.
What they really are is ragged,is a ragged capillary bed, a
leaky capillary bed.
So you have where thatinflammation was or that bleed
was way back when it isn'tbleeding.
There's no blood in the joint,but there's fluid.
And the fluid hurts.

(01:30:30):
The fluid is stretching thosenerve endings and making it so
they can't function well.
And so I I know that regularprophylaxis helps seal up those
capillary leaks.
Estrogen therapy helps seal upthose capillary leaks.
So uh now the treatment shouldbe a little bit more focused on
well, what's causing thecapillary leaking and what fixes

(01:30:50):
capillary leaking because that'swhere the pain is in bleeding
disorders.
Now we're not talking aboutsickle cell patients today, but
they're chronic pain patients.
And so they have a lot ofsimilarities in understanding
where the problem really is.

SPEAKER_08 (01:31:04):
But pain management starts with addressing the root
cause problem.
And and so often I think evenfor women, we we hear women
report regularly that they werejust taking, you know.
Oh, we we hear people talkingabout taking Tylenol, we hear
them talking about taking Advil,and and they don't they're not
putting two and two together torealize that in some cases they
may be making the problem worse,even because they're taking this

(01:31:27):
Advil now, and it's you know,it's causing them to even
potentially bleed even more, um,you know, or have additional
problems.
And I think, you know, it's it'syou're exactly right.
There's a disconnect sometimesbetween even the explanation of
what I'm experiencing in my bodyand the and then the treater and
the and the provider looking atit and going, okay, well, you

(01:31:49):
know, unless you say those, someof those scientific references
and in your explanation, youknow, people, you know, how many
times we've heard people saythings like, Yeah, you know,
just my my grandma hadarthritis, my, you know, my my
dad had arthritis, I havearthritis.
You know, it just it just runsin the family.
Well, you've you even withinyourself, you've d dismissed
bringing that up in the clinicvisit because that's just

(01:32:12):
something that you've alwaysjust know, oh yeah, yeah.
In my family, we just have long,heavy cycles.
That's just everybody has, youknow, very heavy menstruation.
That's just the way my familyis.
And so they don't think to bringthat up in the clinic unless
that's being asked or pursued.
But I do sense that there is asense of like apprehension and
and to to even pursue some ofthose questions from the

(01:32:33):
parietal level sometimes,because and and and I think it's
a litany of reasons.
I think sometimes it's becauseit's difficult to even convince
the insurance formulary.
You can you can have a come toan agreement in the clinic
visit, but you write thatscript, and then the next thing
you get is just this massiveinsurance battle that sometimes
you can't overcome.
And so then what, you know, ifyou have a 30% level or maybe a

(01:32:55):
35%, could you benefit?
Probably.
But is there a is there a point,you know, I know, I know for one
of my daughters, for instance,it was unfortunate, but we had
we had gone over and over andover and over and over and over
again to try to get, you know,her treatment and observing all
of these bleeds, her ankleswould look the same size as
mine.
And and she, it wasn't untilthey did ultrasound and realized

(01:33:17):
that she was bone on bone,completely deteriorated
cartilage in one of her ankles.
And it and it initiated, we knewit initiated from a major
injury.

SPEAKER_06 (01:33:26):
If you put joint bleed in there, then the
insurance company will cover it.
Right.
But you gotta put joint bleed.
And yeah, I I yeah, well, whatare you doing that for?
Joint bleed?
Right.
Oh, okay.
And how do you document a jointbleed?
Some type of imaging, right?
Yeah.
So it either needs to be an MRIor a CT scan.
And and so what I like to tellwomen is okay, uh, how do you

(01:33:49):
get yourself organized?
If you only have 15 or 20minutes, then how are you gonna
get the most out of your visit?
Right.
So uh number one, bring a list,right?
Bring your list and bring a listof all the times when you think
you've had bleeds.
So you don't have to go throughthe story of each one and how
you were feeling, what you werewearing, and what the face of
the moon was, because Dr.

(01:34:10):
So-and-so doesn't care, right?
Only wants to know what thesymptoms were and if something
made him better or worse, right?
What was the body part?
What were the symptoms and whatmade him better or worse?
That's it.
That's the whole thing.
That's all they want to know.
And so uh, so we don't want goodstorytelling in the clinic.
We want just a list of factsbecause those lists of facts are

(01:34:32):
how we're gonna list in our noteand we're gonna say patient had
this symptom there then and thissymptom then.
And the other thing is if a boyhas two bleeds in a year, that's
enough to justify prophylaxis.
Well, if a girl has 12 periodsin a year, why isn't that a
cause for prophylaxis?

(01:34:52):
Why doesn't that justifyprophylaxis?
That's 12 bleeds.

SPEAKER_01 (01:34:56):
Wow.
Right?

SPEAKER_06 (01:34:57):
Like maybe she's missing three days of school or
work.
You know, why doesn't thatjustify factor?

SPEAKER_01 (01:35:05):
Right.

SPEAKER_06 (01:35:05):
Yeah.
So, and then she has theswelling here and there too.
So if two bleeds a year isenough to justify prophylaxis
for a boy, two bleeds a year isenough to prophyla to justify
prophylaxis for a girl.
But you got to document what itis you're doing and why.
And then the other thing is isdecreasing the stigma about how
hard it is to get infusions,what do you need to do?

(01:35:26):
Well, factor's expensive enoughthat a home nurse comes with it,
doctor.
So send the home nursing orderand make the home nurse go out
there and administer that factorand leave the peripheral IV in.

SPEAKER_07 (01:35:42):
Yeah.
Yeah.

SPEAKER_06 (01:35:43):
And the woman can give herself another dose of
factor.
One dose of factor is neverenough.
Whose idea was that?
Right?
I actually had a whole longconversation and I keep on doing
this, and I see more and morepeople understanding this, like
uh a mild hemophilic patientgets a dose or two of a factor,
and um, and then um for aprocedure or whatever, and then

(01:36:06):
you proceed to ask them, howlong did it take you to heal?
Three months.
Three months?
What?
That's not right.
These are these are hemophiliatreaters that have been taking
care of bleeding disorders for30 years, right?
These are not novices, but theynever asked that question, and

(01:36:27):
they had no idea.
You can't treat hemophilia fortwo doses.

SPEAKER_07 (01:36:33):
Come on.

SPEAKER_06 (01:36:34):
You can't.
If you have someone with severehemophilia, they're gonna get a
couple extra doses, and thenthey're going right back on
profile.
You know what I'm saying?
Like, same with mild hemophilia.
You need consistent levels thatare gonna go throughout the
duration of treatment.
And they're like, Do I reallyneed all this factor?
Do you really want to heal?
Yes, you need all that factor,right?

(01:36:56):
Right.
Like I have a beautiful22-year-old, 22, 23, I don't
know.
And he's uh he's been on hemeLibra, right?
Loves the medication, but he'sbeen playing sports, and uh
every time he goes and playssports, gets some swelling in
his ankle, a little bit of,he'll do a dose of his standard
half-life factor, and um, youknow, and it'll get better.

(01:37:20):
But uh, and then every time hegoes back out to play, repain,
it hurts, right?
And so, you know, you look athis ankle, compare it to the
other side, and I'm like, well,did you notice there's some
swelling here?
He's like, No, I didn't reallynotice that.
And I was like, Oh, look, it'snot moving quite as much as the
other one now, is it?

(01:37:40):
And he's like, No.
And I'm like, okay, if we'regonna fix this, then we need to
fix it, and we need to fix ithard for a period of time
because it's either gonna getfixed now or it's never gonna
get fixed.
So, like he's on a four-weekprophylaxis program because
that's chronic cinnovitis, andit's gonna take some time to
heal.
And he can't, and he shouldn't,be off walking.

(01:38:03):
He's not gonna pay play thatparticular sport, he is gonna
take it easy.
Thankfully, it's summer and he'snot in college right now, so he
can take the time off to dothis, but he looked at me like,
what?
This is a lot of factor.
And I'm like, it's a lot offactor.
This is what it takes.
If you really want to fix this,this is what it takes.

(01:38:24):
And you know, so even with thehemebra, we have to be really
thinking about what does itreally take to solve that joint
problem?
And honestly, it is a hugeamount of effort.
Um, so it's it's just it's wayeasier to prevent those bleeds
than fix them.

SPEAKER_08 (01:38:43):
Well, the alternative is also like you
said, like permanent damage oryou know, potentially surgery
down the road.
Rapid progression.
Rapid progression.
Like it just goes away.

SPEAKER_06 (01:38:52):
No, we can but we can make a big improvement where
we're totally interrupting therapid uh dissolution of that
joint, like what your daughterhad, right?
Because that bad injury and thenjust continual chronic bleeding,
like it just never got betterafter.
Yeah, I know exactly.

SPEAKER_08 (01:39:11):
We I had a um uh one time I was painting my hallway
in my in my house, and we livein a whole old house, and it was
I was painting it.
And uh it was like a it was likea long day.
I was just doing it for I wastrying to get it done for like
probably family visiting in townor something.
And so I'm like painting away.
And so for for for like uh andmy right arm, I've had uh repla

(01:39:33):
I've had an elbow replacement.
There are actually three, whichis not a fun story.
But but um but my so my my leftarm is my strong arm.
So here I am up above my head,like all day painting for like
14 hours or something crazy likethat.
And so anyway, somehow oranother, I just strained the
muscle in my back somehow injust a certain way that it just

(01:39:53):
started swelling and it justnever got better.
I mean, so like two days, threedays later, I'm like, I'm I'm
I'm at a point where I'mdebilitated.
I can't move.
I'm like in tons of pain.
In my own, now here I am at Idon't know how old I was at the
time, maybe 40.
And I'm thinking like, I, youknow, I am not putting two and
two together.
I'm still thinking this is justold man syndrome.

(01:40:16):
This is this can't possibly berelated because I don't have
muscle bleeds that often becauseI do treat prophylactively.
Yeah.
I wasn't off my schedule, youknow, knock on wood.
But I I was, you know, I I'm Iso I'm thinking this can't, I'm
treating, uh yes, I did a lot ofactivity, but it's probably just
I just pulled a muscle or it'sjust a sore muscle.

SPEAKER_01 (01:40:34):
Yeah.

SPEAKER_08 (01:40:35):
Well, I go to my, you know, uh, I finally I I I
call the treatment centerbecause I'm like, I may need a
couple extra doses because Imight, I don't know, like this
maybe this is something I shouldbe concerned about.
Because after four days and thisis still like really throbbing
and I can't sleep at night andall this stuff.
Anyway, so they're like, come onin, let's let's look at you, do
a you know, work up.
And so anyway, I remember thedoctor looked at me and she was

(01:40:57):
like, listen, Jonathan, shegoes, she goes, you're gonna
have to get really aggressivewith this, and you're gonna have
to trade.
I don't remember what the exactdosing was, but it was like it
was something like what youreferenced, like, you know,
every day for this many days,and I want you on complete bed
rest for the next three days.
And I'm thinking, I've got abusiness trip and a thing, and I
can't slow down, and this islike a Monday, and I need to by

(01:41:18):
Wednesday.
I'm like, there's no way I can'tpossibly take three days off to
like slow my life down toaddress this.
And maybe I can take themedicine, but I don't, I just
can't put my life on hold forthis, you know.
And uh, and I'm I'm thinking allthis in my head while she's
talking.
And so finally I'm like, I look,I if I'm just being really
honest, like I can't take threedays of bed rest.

(01:41:39):
Like, I just don't have thetime.
And she says, Okay, fine.
I will admit you into thishospital and force you to be
down on bed rest on bed rest.
Yeah.
And she she's like, I will forceyou to be on bed rest in the
hospital if you don't just ifyou don't go home.
And so I was like, okay, fine,fine, fine, okay, fine.
I'll go home and I'll be on bedrest and I'm gonna infuse and

(01:42:00):
all this stuff.
And and she goes, and I'mwalking out of the clinic.
She goes, I'm calling Carla.
If you don't do this, I'mcalling her before you get home.
She's Carla's gonna make certainthat you get on bed rest.
Well, I did, and and you know,over those three or four days,
all of a sudden it starts toimprove significantly in just in
in just just a few days.
And I really was on bed rest andI listened, which is hard to get

(01:42:22):
me to do sometimes.
But even for me, I still am notputting two and two together to
go, this is a this is a musclebleed, you know.
And she's like, no, this isabsolutely a muscle bleed, and
here's what we're gonna do tofix it.
And I look back on that time andI think, man, that if I had not
gotten that aggressive aboutdoing that specific treatment

(01:42:43):
regimen, you know, like that,there's a good chance that that
could have continued to be aproblem for a long time.
And yeah, I'm so grateful, butbut in that moment, I was like,
uh here I am at 40 years old,lived with hemophilia my whole
life, gone through all thesesurgeries, all this stuff.
And even for me, I'm still notasking the right questions or

(01:43:03):
even thinking that this is theproblem, even when the
solution's presented to me.
And it makes me think so oftenabout I I think this is broadly
across the whole community, butespecially for uh uh women who
have been told for decades that,you know, really all forever,
that you you can't have this.
It's just you might can be acarrier.

(01:43:24):
You you're you're gonna be acarrier, but you if you're a
carrier, you're you're you it'sa rare possibility you might
have symptom.
Well, yeah, that's that's justwe've learned too much now.
We know too much.
And so now being able to changethe language, even in our own
minds, and saying, hey, you knowthat that menstrual cycle that
you have that lasts 10 days,like that's that's probably

(01:43:46):
something you should think of incontext of you have a genetic
mutation.
And if you can put those twothings together mentally, maybe,
maybe you can start having aconversation with your provider
that's more in the in the areaof like, hey, I think this might
help me.
And and then you startrealizing, oh, I had a sprained
ankle, and it took me threemonths to recover from it.
Well, that's not normal, youknow.

(01:44:07):
Like there's there's probably aneed for treatment there.

SPEAKER_06 (01:44:11):
Yeah.
Um so you had some questions forme beforehand.
And I want to make sure there'sone I want to make sure that we
answer.
Uh so um so when it comes towomen in hemophilia, there okay,
there are two big things.
Number one, when I was in my 20sbefore medical school, there was

(01:44:32):
a conference.
The National HemophiliaFoundation had um done some
focus groups to figure out isthere really a problem?
Do women bleeding have bleedingdisorders, right?
So this is in the early 90s.
So um they determined yes, therewas.
And um, and there was limitedamount of funding.

(01:44:55):
And the von Millebrand diseasehad been almost uh completely
unknown.
There were hardly there washardly any literature about it,
there were no programs for it,uh, nothing, nothing for von
Millebrand's disease.
And so um group of physicians,group of patients.
I uh was in that council.

(01:45:16):
I voted that we shouldn't leavehemophilia A and B behind, but
they said we only have this muchmoney, we have to make a choice.
Von Willebrand's as far morethan hemophilia carriers, and
the hemophilia carriers arealready kind of in the clinic,
so we're going to focus on vonWillebrand's disease.
So that was Project Red Flag,and it was all about von

(01:45:38):
Willebrand disease andincreasing physician awareness
in Obigayne offices, blah, blah,blah.
So, so that effort primed themedical community for the rest
of the bleeding disorders,right?
And so uh, but hemophilia A andB and women was specifically not

(01:45:59):
included because they didn'tfeel like they had enough
resources in order to just packthat on along with it to figure
it out.
Well, I mean, I was still inmedical school, so I didn't, you
know, I didn't even know what Iwas talking about, or I had just
started medical school, I don'tremember, but I and I had a new
baby, and you know, I had a loton my plate.

(01:46:22):
So I stopped going to thebleeding disorders.
I wasn't heavily involved inbleeding disorders work at the
time, a little bit here andthere, but not consistently.
Um gosh, let's see.
So uh roll time forward 20 yearsand um I mean I even I have

(01:46:46):
these old slides.
I have this old uh what was it?
It was it wasn't hemoware.
Was it hemoware even back thenin the 80s and 90s?

SPEAKER_08 (01:46:54):
I think in the 90s.

SPEAKER_06 (01:46:55):
Yeah, there was uh there was a hemorrhage.
I have a copy of this magazineat home.
I saved it and it has this bigpicture on it.
One of my friends is actually onthe cover of it.
And um it says women andhemophilia or something like
that.
And I was so excited about this,right?
Because I'm like 18 orsomething.
I was seeing this and oh mygosh, women and hemophilia.

(01:47:17):
And I open up this magazine andit's about caregivers.

SPEAKER_07 (01:47:20):
Oh wow.

SPEAKER_06 (01:47:21):
Mothers, wives.
I was so mad.

unknown (01:47:26):
Oh.

SPEAKER_06 (01:47:26):
Right?
And then and this isn't the onlytime.
So um I'm like what, 17, maybe,uh somewhere in high school,
junior, sophomore, junior,senior, I don't know, somewhere
in there.
I wasn't a senior yet, but I hadbeen to the hemophilia clinic at
the University of Utah, and theygave me this whole binder,
right?
It was a an HTC clinic visit.
I met with the geneticist, I metwith the psychologist, I met

(01:47:49):
with the, you know, uh, thehematologist, they're great guy.
Um, it was Dr.
Bibee.
He's he was before GeorgeRogers, who's a wonderful man.
Anyway, um, so before GeorgeRogers and um uh and had my
first HTC visit, and um, and Iget this whole big fat binder.

(01:48:12):
It's like this huge three-ringbinder, a bleeding disorder,
care and management ofhemophilia, right?
Zero information in that binderabout a girl with hemophilia.
I was pissed, right?
And so uh so this problem hasbeen around, but as I was in
medical school and doingresearch, and then during my

(01:48:33):
fellowship at the um BloodworksNorthwest, it wasn't called that
at the time, but I did atwo-year fellowship with them to
learn about hemophilia care.
And during that time, I starteddoing research about well, like
has there been anything elsewritten about women with
hemophilia?
And there has.
There have been case reportsabout women who have sons with

(01:48:55):
hemophilia who had low factorlevels that had nearly died from
hemorrhaging.
They've written as far back aslike 1916 in the medical
literature.
So these bleeding symptoms inwomen, they've been known
forever.
They're the knowledge has alwaysbeen around.

(01:49:16):
So why hasn't it been paidattention to?

SPEAKER_01 (01:49:20):
Right.

SPEAKER_06 (01:49:20):
And uh I can come up with a lot of different reasons,
but the truth of the matter is,you know, I don't know, but now
is the time.
There are studies out there thatshow that women have uh
deterioration of their jointseven if they don't have symptoms
the same as men.
Um, you know, we know if a if aman with a factor level of 30%

(01:49:44):
gets a surgery, he's gonnableed.
Why wouldn't a woman with afactor level of 30% get a bleed,
you know, get a bleed, right?
I did a project during myhematology fellowship where I
asked women who were knowncaries who had been genetically
sequenced either because oftheir sons or for other reasons.
Um and I went through and all ofthem with genotypes and I asked

(01:50:08):
them their bleeding symptoms.
Well, even if they'd never hadany other bleeding symptoms,
eight out of 10, 80% had atleast heavy menstrual bleeding.
And if they really had factorlevels above 80%, because I
wasn't sure, I'm like, oh,everyone who's a carrier is
gonna have some bleedingsymptoms.
No, if they have factor levelsabove 80%, they have zero
bleeding symptoms.

(01:50:28):
Like they do not bleed at all.
And, you know, and I'm like,okay, yeah.
And then there are these womenwho have levels between about 40
percent, 40 to 5 to 60 percent,and you have a really variable
phenotype.
Either you can have bleedingsymptoms or you don't, and it
probably depends on what elseyour body is made of.
Um so uh, and we know as we'velooked into coagulation that

(01:50:53):
there are a lot of modifiers tobleeding disorders.
So if you're somebody who takesibuprofen regularly for whatever
creaky reason, you're probablygonna have more bleeding
symptoms.
Um if you have a variation ofaler standos, you're definitely
gonna have more bleedingsymptoms.
Sometimes you can have amyelplat disorder because
they're really common, andyou're gonna have more bleeding

(01:51:15):
symptoms.
And so there are lots of reasonswhy one woman is gonna have a
different phenotype outside ofjust the special way the genetic
material is distributed on the Xchromosome.
There's another deeper problem,and that is that when uh at
least when I was in medicalschool, and I don't know if

(01:51:35):
they're teaching it better nowbecause I haven't asked, but X
chromosome inactivation, whichhappens very early when a when a
two like an X egg and an X spermmeet, and uh and that
fertilization event occurs.
As that egg is dividing, atabout, you know, it divides, and

(01:51:57):
then there are two, and thenfour, sixteen, thirty, two,
sixty-four, somewhere in there,one or the other X.
But before that is even morethan a ball of cells, those
cells are making a decisionwhich X is gonna be on and which

(01:52:17):
one is gonna be condensed forthe lifetime of the woman.
And each cell is a different, isit's gonna be different, right?
So uh so that it's not like allof one and all the other, right?
Mother Nature is gonna use everyopportunity to give that woman
genetic diversity, right?

(01:52:37):
So on average, half of the Xchromosome she got from mom is
turned on, and on average, halfof the genetic material on the X
she got from dad is gonna beturned on, but it can be either
10% of one and 90% of the other,or 30-70, or 40-60.

(01:53:00):
But that event is unique in eachwoman, and it's that event which
determines in part how muchfactor she has.
And so if she has 20% of factoreight, she's gonna bleed more.
If she has 80% of factor eight,she's gonna bleed less.
So you have to think about eachwoman in a family as their own

(01:53:22):
person and they and their ownrisk of bleeding.
And that's confusing to aphysician, you know.
Like you have to go through alot of mental training and a lot
of physiology to come up withthat.
And I, you know, I mean, I wasgiven the opportunity over
several years, right?

(01:53:43):
This was my constant focus.
Why?
Why do physicians not understandthis?
That X chromosome and activationinformation that was discovered
by a woman in in England in the50s, Mary Lyon, and her lab
director, like every other labdirector at the time, stole her
work, taught it wrong.

(01:54:05):
Taught it wrong.
It when I went back and saw thestudies that she published, she
published exactly that.
She described it beautifully.
And it and then her mentor tookher research and interpreted it
differently than how shepresented it.
Like the way I read it, I waslike, oh, this is simple, this

(01:54:27):
makes sense, right?
And then taught it wrong.
So generations of physicians gotan incomplete idea of what that
elegant work that Mary Lyonpublished back in the late 50s.
So the problem is on so manylevels women's health hasn't

(01:54:48):
been addressed and still isn'tand doesn't have a friend in the
current administration.
Factor's hard to administer.
It takes a lot of patience, andit's harder to do in women than
it is in men.
It's expensive.
For a while it wasn't even safe.

(01:55:10):
Like, there's a lot of reasonwhy.
Yeah.
Oh gosh, and then, oh, should webe giving factor around the time
of delivery?
Well, yes, we should.
Oh, but women get clots fromlines.
I've had heated arguments withproviders within this past year
about putting a line in a womanwith a bleeding disorder to

(01:55:31):
administer her factor becauseshe's gonna need it every six to
eight hours post-delivery, anddoing that by a peripheral vein
at home with a squalling infantat her breast is not gonna be
easy without a line.

SPEAKER_01 (01:55:44):
Right.

SPEAKER_06 (01:55:45):
You know, and this guy's like, I can't put in a
line, I'm not sending her homewith a line, she's gonna get a
clot.
And I'm like, oh my gosh.
She doesn't need factor for twoweeks.
I'm like, wait, wait.
Young OB kind physician.
Right, right.
Why are you arguing with me?
And I'm blown away in my head.

(01:56:06):
I'm like, what did I do wrong asa woman where this young guy is
arguing with me about theduration of factor therapy for
this woman who is documented,almost died from postpartum
hemorrhage.
Why is this young guy why is hearguing with me about the
duration of factor?

SPEAKER_01 (01:56:25):
I'm like, right.

SPEAKER_06 (01:56:27):
How does he even have the nerve to tell me how
much factor this woman needspostpartum?

SPEAKER_01 (01:56:33):
Right.
Right?

SPEAKER_06 (01:56:34):
You know, I'm like, you just met this woman.
I've known her for a year and ahalf, right?
I've been treating her periodsfor five days of factor every
month.
And you think she's gonna getthrough delivery with three days
of factor?

unknown (01:56:46):
Wow.

SPEAKER_06 (01:56:46):
I'm like, where do you get off?
You know, and I I mean I was sotaken aback by that.
I was really, really unpreparedfor that.
And um, I actually had to go tocounseling over that to figure
out how to get over that becauseI I really was mentally
unprepared for a young man tochallenge my authority, where I

(01:57:09):
have more authority than anyoneI know in the West, and there's
no one else I know in Arizonaexcept for a couple of
physicians at Phoenix Children'sHospital who know more about
treating bleeding disorders thanme.
And not just because my personalexperience, but because I spent
a couple years in a coagulationlab, a couple years doing

(01:57:29):
research and the hematologyfellowship, and I didn't get
troubled by anything else.
I was really really focusedabout the mission is to get
physicians work into the bodiesof patients.

SPEAKER_08 (01:57:44):
So you know, I I hate to say this, but um, I do
hear this a lot often from fromthe community members that
there's this sense of like,well, if I'd gone, I know I'm
not, you know, a physician, buthere I am trying to explain my
symptoms, and I don't feel likeI'm in the emergency room and
they're just not listening tome.
And it's like if I was just onlya physician, maybe then they

(01:58:06):
would listen to me.
And um, you know, I know itdoesn't help the situation at
all, but it it does, you know,it's sort of like as a as a
person who has had to advocatefor himself in those emergency
moments, and you feel likeyou're just not being heard,
like it, it's both shocking anda little bit like, you know, um

(01:58:26):
uh comforting is not the rightword, but it's it's it's
shocking, but also like likesurprising in a sense that you
you are facing uphill.
Yeah, it's affirming that likeyou also even at the highest
level degree physician that youmost expert, most experienced,
and you still can't get throughto some of these other barriers.
And I really believe that it'sgonna take a multi-pronged

(01:58:49):
approach to be able to changethe narrative for women in
general to be able to get thetreatment that's needed.
I I do think that it's probablygonna start with the you know,
the the the textbooks and thediscussions that are happening
in school.
I think it's gonna ha have tochange from the research that's
being published.

SPEAKER_06 (01:59:05):
I think it's gonna have to do Oh gosh, there's a
ton of research.

SPEAKER_08 (01:59:08):
Really?

SPEAKER_06 (01:59:09):
Yeah.
We uh with Fair Time for Women,yeah.
We went through and we pulled.
There are like a hundredarticles about bleeding symptoms
in women.
So what we need to do is we needto start talking about those.
Yes.
We need to print all those outand we need to send those to any
woman's home and say, take thisto your doctor's office with

(01:59:31):
you.
Yeah.
You know, I and and you know, soyou know, I know we've been at
this for a little while here.
And so uh so a couple of thetake home messages that I would
have for women is um is is thefirst thing is ask for an image.
Okay.
An image is worth a thousandwords.

SPEAKER_08 (01:59:52):
Like an ultrasound.
An ultrasound, a CT scan.
Yeah, yeah.

SPEAKER_06 (01:59:56):
If a doctor said, if you say I'm having pain and I'm
worried it bleed, it's A bleed,and the doctor says, Oh no, that
can't be a bleed.
Then um then ask, Well, what isit then?
It's disrupting my life.
If it's not a bleed, can youhelp me figure out what this is?
Because it's disrupting my life.
It's disrupting my life.
I can't wash my dishes becauseof this.

(02:00:18):
I can't go to work because ofthis.
I can't, I can't perform myresponsibilities because of
this.
You have to follow that up withit's not just pain, it's
interfering with my life.
It's interfering with my abilityto perform my duties.
So it's really, it's it's it'sit's being curious.

(02:00:42):
Why do you think this isn'tinterfering with my life?
Right.
These are people who delayedgratification over and over and
over again to be in thephysician's seat.
They want to help.
They want to be liked.
Physicians want to be liked.
They want to have yourconfidence.
And they get shook when youdon't believe, when you're not

(02:01:02):
confident in their opinion,right?
That does disturb them.
Well, we need to, we need toallow our voice to be heard, and
we need to be confidentourselves that what we're
experiencing deserves to beexplored.
Well, if it's not a bleed, whatis it?

SPEAKER_02 (02:01:20):
Okay.

SPEAKER_06 (02:01:21):
Last story for you.
15-year-old, dad has severehemophilia.
She's a, you know, she's asymptomatic carrier.
She has mild hemophilia A.
So we can use whateverterminology somebody else, like
symptomatic carrier, carrierwith symptoms, manifesting
carrier, hemizygote, person withhemophilia, girl with

(02:01:43):
hemophilia, woman withhemophilia, gender neutral
person with hemophilia.
Doesn't matter.

SPEAKER_01 (02:01:49):
Right.

SPEAKER_06 (02:01:49):
Pick your term.

SPEAKER_01 (02:01:50):
Right.

SPEAKER_06 (02:01:50):
Whatever that person understands, we'll use that
because we can just build withthat.
Okay.
Right.
Like we don't have to change anylanguage as long as someone has
at least a beginning.
Okay.
So 15-year-old comes in andshe's got foot pain.
Both feet or ankles and herankles hurt.
Okay.

(02:02:11):
Um factor levels about 30%, 25%,whatever.
Well, her feet hurt.
Okay.
Could that be bleeding?
Could be bleeding.
But what did we do?
We did imaging.
What does she have?
Flat feet.
That's why her ankles and herfeet hurt.
Not because of bleeding.
And then she was B12 deficient.

(02:02:35):
Um, she was vitamin D deficient.
She was iron deficient.
So we put her on Heme Librabecause she also had a very
well, she tried factor for herperiods, and it was taking seven
needle sticks to get a dose offactor for her.
Okay.
This is her grandmother'sexperience at infusing.
Her father's an expert.

(02:02:56):
Okay.
They couldn't get her veins,right?
She's having 12 bleeds a year.
We put her on Heen Libra.
When I first met this girl, shebarely looked at me and would
not talk.
She let her dad say everythingfor her.
Okay.
Oh, and then and then we got herappropriate footwear.

SPEAKER_02 (02:03:17):
So her feet stopped hurting.

SPEAKER_06 (02:03:20):
And the B12 deficiency actually helped her
nerve endings to recover.
So that that pain in her legsand her feet was actually in
part from needing orthoticfootwear supporting her arches,
but also from the B12 deficiencyin her nerves, nerves hurting.
So she wasn't having bleeds.
But she was having heavyperiods.

(02:03:42):
And so for that, she gothealibra because when you bleed
for 12 days, that's just how canyou have a normal social life?

SPEAKER_01 (02:03:52):
Right.

SPEAKER_06 (02:03:52):
You know?
You can't.

SPEAKER_01 (02:03:55):
Right.

SPEAKER_06 (02:03:55):
Right.
So uh in a factor level, like30%.
Is she supposed to have bleedingheavy periods like that?
No.
But she is.
Okay, so she does.
So heen Libra.
Roll time for I see her sixmonths later.
This time in the clinic, she'slooking at me.

(02:04:16):
She'll answer some questions.
Her dad doesn't have to do allof the talking.
Next time I see her in theclinic, she's playing sports.
The depression lives.
She's more interactive.
You know, factor therapy changesfamilies.

(02:04:39):
It changes lives.
It changes families.
Whatever it is.
You know, if heme labor is anoption, I put her the mother,
her uh, oh, one stage factorlevel 50%, chromogenic factor
level 10%.
I put that lady on factortherapy.
Yes.
I put that lady on, she's 70,right?

(02:05:02):
So dad, daughter, grandmother,right?
So uh or his mother, his mother,his mother.
Um she so so part of the issuewas that we didn't do the right
assay, but she's on, so she's70.
She's on heme libra.

SPEAKER_01 (02:05:19):
Wow.

SPEAKER_06 (02:05:20):
Okay, she's still a school teacher.
She's still teaching school,right?
Yeah, she's a fifth gradeteacher.
Do I want to keep that lady atwork?
Yeah, because there aren'tenough teachers.
Right.
Heme Libra is allowing her tostay at work, right?
Because this was 67.
She was gonna retire.
And the reason why she came isbecause her knees were hurting

(02:05:42):
so much, and she was complainingevery day.
And her son dragged her butt in.
Mom, mom, can you take care ofmy mother?
You know?
So then I, okay, so she's beenon treatment for a while.
And I saw her a couple monthsago, and she's like, Do I really
need this peen libra?
Do I really need it?

SPEAKER_02 (02:06:02):
And I just feel good.

SPEAKER_06 (02:06:05):
I feel really good.
And I was like, Well, remember,remember when you first came to
see me and your back hurt andyour knees hurt.
Yeah.
And that's when we that's why westarted the medication.
Do you remember that?
Because this is a couple yearsago now, right?
I remember because I'm woundedin her head.
Like, and I'm justifying why,you know, register needs to pay
for this, and this is why,right?
And so, you know, and and she'slike, She's like, oh yeah,

(02:06:28):
that's right.
You know, and I'm like, yeah,yeah.
And I I see that you're alsowearing tennis shoes and not
flip-flops anymore.
Remember, why did we start thisshow?

SPEAKER_01 (02:06:36):

SPEAKER_06 (02:06:38):
Oh yeah, that's right.

SPEAKER_01 (02:06:39):
Yeah, that's right.

SPEAKER_06 (02:06:40):
Yeah, that's right.
I remember I don't wear thoseshoes anymore either, do I?
You know, so it's always, youknow, it's always like I have a
little bit more time.
Yeah.
Right.
I am allowed that at my workenvironment.
I am so grateful for that.
And I often talk to my leadersabout how grateful I am that

(02:07:03):
they're creating that space forme.
And, you know, they're doing itbecause 30% of the referrals to
the cancer center are fornon-cancer reasons, and that's
why I'm there and I see thosepart of those referrals.
But the exchanges that I alsoget to take care of bleeding
disorder patients.
And even though the patientvisits went up from 200 to 400 a

(02:07:24):
year, the hospitalization at myhospital and those hospitals I
touch dropped.

SPEAKER_03 (02:07:29):
Wow.

SPEAKER_06 (02:07:30):
And so those numbers that's being prepared for
somebody to notice.
Look, I have been keeping track.
This is what I said I was gonnado three years ago, five years
ago, seven years ago.
Yeah.
This is what I'm doing.
Here are your numbers, right?
Here.

SPEAKER_00 (02:07:47):
Yeah.

SPEAKER_06 (02:07:48):
When I see more patients, your risk goes down in
the hospital.
And so, yeah, outside of thehospital, the insurance has to
pay a little bit more.
But hospital administratorsdon't care about that.

SPEAKER_00 (02:08:01):
Yeah.

SPEAKER_06 (02:08:01):
They care about hospitalizations.
When we see patients, whenpatients see providers who have
experience in bleedingdisorders, quality of life
should go up, hospital rateshould go down.
Yeah.
And um factor level does usuallygo up.
But that's okay because we keepthose people out of the

(02:08:22):
hospitals.
We change lives with factor.

SPEAKER_03 (02:08:24):
Yeah.

SPEAKER_06 (02:08:25):
And we do it by being prepared for our physician
visits, by asking for imaging.
If your doctor says go get animage, go get the image.
Yes.
And do it now.
Drop what you're doing.
It's that important.

SPEAKER_00 (02:08:40):
Yes.

SPEAKER_06 (02:08:40):
Go to the ER, get the image.
Because I want to know if that'snot a bleed, what is it?
Is it a tear of a meniscus thatkeeps hurting you?
Because no amount of factor isgoing to fix that.

SPEAKER_01 (02:08:51):

SPEAKER_06 (02:08:52):
Is it tendinitis?
No amount of factor is going tofix that.
You know what I'm saying?
Like we need to know what it iswe're dealing with, and then we
can fix it.
But not every pain is a bleed,and not every bleed is
recognized as a bleed.
As you so thoughtfully remindedus today.
Yeah.

SPEAKER_08 (02:09:13):
I really appreciate this conversation so much.
And I and I feel like that itreally starts.
We kind of talked about it.
Sometimes the problem is betweenour own two ears.
I feel like if we as patientsask better questions and we come
to that conversation with somelevel of empathy to understand,
hey, there's a lot going on forthe physician too.

(02:09:34):
Like, you know, that that thatwe're not coming in.
I always say there's adifference between being an uh
an advocate versus being anactivist.
Sometimes there's thisadversarial type nature that
people come in because they'vebeen so hurt, they felt like
they weren't heard, they feellike that they're in a battle
all the time with their ownbody.
They're they're sort of likecome into this with their dukes

(02:09:54):
up and like ready to go.
And so that creates can createtension before you even have the
opportunity to get with theright person.
And so, you know, I do believewe've got to be able to take a
step back sometimes, even if youhaven't been heard as a person
living with a bleeding disorder,that you know, that you still
have to find ways to you canattract more bees with honey

(02:10:16):
than than vinegar, right?

SPEAKER_06 (02:10:17):
Come fresh to each new interaction.
Yeah.
And and, you know, I mean, I I'msympathetic to the physician
side of things.
I get tired.
I am tired.
I work really hard.
If someone says it took threemonths to get into you, Dr.

(02:10:38):
Nansen, I say, Yeah.

SPEAKER_08 (02:10:41):
I'm that busy.
Yeah.

SPEAKER_06 (02:10:42):
No, I'm that I, you know, I mean, I'm not
apologetic.
I do the best I can.
I sleep pretty well at night.
Because I know I did my bestthat day, even if I fell short.
Yeah.
And I couldn't oh, I didn'talways have that confidence.
I'm grateful that I'm learningthat now.

(02:11:03):
Yeah.
Um it isn't all up to thepatient, right?
The patient has to have has tohave the right provider who's
present and well rested enoughto hear what they say.
And it isn't always thephysician, you know.

(02:11:26):
Sometimes it's it's the nurse,sometimes it's a medical
assistant, sometimes it's aphysical therapist, you know.
But there's probably one personamong that team who's gonna have
the bandwidth to hear you.
So if you weren't sure you wereheard, say it again.

unknown (02:11:44):
Yes.

SPEAKER_06 (02:11:45):
If you sent a message to your clinic and they
didn't respond, maybe they got80 messages that day.
This actually happened to me.
I kept having people tell methey left three messages and and
why didn't we read respond tothem?
And I was like, gosh, that'sweird because I saw the lists of
voicemails that the nurses werepulling off.

(02:12:07):
Like there was always somebodylike listening to the voicemail
and pulling them off.
And we had notebooks full ofthese things, right?
And then the conversations goingback and forth between the back
office staff and how many timesI got interrupted in my thinking
to answer a message for forsomeone that had an urgent call.
And, you know, and I'm like, howis that possible that someone
left three messages and no onecalled them back?

(02:12:29):
And it's because when thevoicemail got full, someone
would leave a message and itjust wouldn't record.
So they thought they left amessage, yeah, and no one ever
heard it because it never gotrecorded.
So sometimes, sometimes theprovider really didn't get the
message the way that wasintended.

SPEAKER_01 (02:12:50):
Right.

SPEAKER_06 (02:12:50):
And so you have to ask again did you get my
message?
I left a message.
Well, no, I didn't.
But I don't know why I didn'tgot that message because I got
so many.
I mean, I had nurses quitbecause there's so much work.
It's too much.
Dr.

(02:13:11):
Nance, you need two nurses.
One nurse isn't enough to do tokeep up with you.

SPEAKER_01 (02:13:16):
Yeah.

SPEAKER_06 (02:13:18):
What?

SPEAKER_01 (02:13:18):
Right.

SPEAKER_06 (02:13:19):
You know?
Well, to get Well, why am I sodifficult?

SPEAKER_08 (02:13:22):
Right.

SPEAKER_06 (02:13:23):
You know.
Like, why is it so difficult forme?

SPEAKER_08 (02:13:25):
I think the thing that that's so impactful is that
if we just all understood thatgive give everybody a little bit
of grace, right?
If if the physicians can givethe patients a little bit of
grace and know.
You said it earlier at thebeginning, I was talking about
how like if they're coming inand they're agitated and they're
it's because they're anxiousbecause they're in pain in their
body, you know.
Like, you know, there's acertain measure of like if the

(02:13:46):
if the physician could have alittle bit of grace for what the
patient's going through, and thepatients, I think sometimes we
need to give a little grace towhat the provider's going
through.

SPEAKER_06 (02:13:54):
Or just tell us what you're going through.
I cannot read a mind.
Yeah, I can imagine whatsomebody needs.

SPEAKER_08 (02:14:00):
Yes.

SPEAKER_06 (02:14:01):
But yeah.

SPEAKER_08 (02:14:02):
Yeah.
You can't make it up.
You gotta listen.
No.
Right.

SPEAKER_06 (02:14:06):
But but I I don't know what it is if it isn't said
or written down or somehowcommunicated.

SPEAKER_08 (02:14:13):
Yeah, and I just think that it you we've again,
we kind of said this at thebeginning of the conversation is
that you can the best place toform your own language is really
in community.
It's in context of connectionwith others.
And so I really believe with allmy heart that this this
conversation will have apositive impact for people to
give them sort of a framework tofeel like they have permission

(02:14:35):
in a way to just be able to say,okay, wait a minute, these,
these, these extra bruises,these long menstrual cycles,
these difficult bleeds that thatjust don't seem to go away right
away.
And I feel like I need more, youknow, attention to.
Like it it sometimes we justneed permission to ask for for
additional, you know, uh anotherlook, right?

(02:14:55):
Another another visit.
And and then uh I love what yousaid about just how much you
know communication is soimportant.
Is that is going into thoseconversations with well thought
through.
We we encourage people all thetime to journal their
experiences so that they dowrite down a bleed, uh, they do
write down a bruise, they dowrite down this date in time I
was doing this activity and thisis what happened, you know.

(02:15:17):
And and sometimes we and photos,and photos, right?

SPEAKER_04 (02:15:21):
Take a picture of it.
I see a lot of bruises.
A lot of bruises.

SPEAKER_08 (02:15:25):
Yeah.
And so I just feel like thatit's so important to gain that
that language and thatunderstanding for yourself
because sometimes the problemisn't that the treator's not
listening, the provider's notlistening.
Sometimes it's not that theformulary at your insurance
company denied you because ityou, you know, you asked for it
and they denied you.
Sometimes the problem is youjust didn't realize that this
could be a product of your amutation in your bloodline.

(02:15:48):
You know, that you you actuallyare not just a carrier, but you
are experiencing these symptomsbecause you actually have
hemophilia.
And just because somebody hasn'tlaid put that label in your
chart yet doesn't mean that itisn't so.
But you having the you youtalked about earlier the
curiosity, even for yourself,like to go, is that tingling and
burning and is that pain, isthat long side, is that, is that

(02:16:10):
normal?
Is that what I should be?
And investigating that andtrying to build a partnership
with the provider.
Instead of it just being aone-way, you know, street, it's
it's more like how do we worktogether in this?
And and um I I I you know I'm sograteful for the work that you
do.
And I know that if all of yourpatients were here in this

(02:16:32):
moment, that they would just beuh filled with so much gratitude
to thank you so much for whatyou do for them every day.
But your your knowledge, yourwisdom, your expertise, your
grace, and your your um livedexperience of your own is, I
believe, changing the narrative,not just even in this country,
but really globally.

(02:16:52):
I I I don't know of anotherphysician.
There may be one, but I don'tknow of another female physician
who has had the lived experienceof having a bleeding disorder
and having to treat themselvesand also treating as a
hematologist treating otherwomen and other men too.
And um and I just I just um youknow you you very well, I

(02:17:13):
believe, can set the tone andthe trajectory for the entire
bleeding disorder's populationglobally for what the future
could look like if we all justlisten to you.
So thank you so much forsharing.

SPEAKER_04 (02:17:25):
No pressure, right?
Oh, yeah, no pressure.
No pressure.

SPEAKER_08 (02:17:28):
But really, though, keep going and whatever we can
do to help cheer you on.
We're all uh we've got thebiggest uh fan base, we're all
Dr.
Nance fans.
So um thank you so much fortaking your your very, very
precious time and energy to toshare your stories with us today
and to also just do the workthat you're doing every day.
I know it's filled with passionand purpose for you, and uh, we

(02:17:51):
see that.
We see that and we celebrate it,and we're I'm so so grateful for
the work that you're doing andfor your heart for our community
and uh whatever we can do tohelp you and support you along
the way we want to.
So thank you so much, Danielle.
Really appreciate you.

SPEAKER_06 (02:18:03):
Thanks for having me, Jonathan, and your whole
crew here.
It's been a wonderfulexperience.
I really appreciate theopportunity to be here in your
neck of the woods and see howyou're doing things.
Yeah.

SPEAKER_08 (02:18:14):
So a lot of work to be done.
Still more to do.

SPEAKER_06 (02:18:17):
Still a lot, still a lot to be done.
Yeah.
Yeah.
Thank you so much.

SPEAKER_08 (02:18:20):
Thank you.
Thank you for joining me for theHope Podcast today.
And a big special thank you tomy guest, Dr.
Danielle Nance.
It is so important to have theseconversations like this to
further the discussion about howwe can advance research and
increase awareness.
And you can help out by sharingthis episode with maybe your uh

(02:18:42):
providers or maybe your friendsand family who have also been
aware of bleeding disorders andlearn more about the things that
you may face from day to day.
I hope this episode helped you.
And if you liked it, please besure to take a moment to like
and subscribe this video.
It helps the algorithm out.
And it's important to be able toshare this information further
with more people who may beaffected by bleeding disorders.

(02:19:04):
And also we want to say a bigthank you to our episode
sponsor, Janintec, for giving usthe opportunity to be able to
share more content like thiswith you.
It's so important to be able tohave moments like this, and we
hope to see you in the next one.
Thanks so much.

All Episodes

Episode Transcript

Popular Podcasts

Stuff You Should Know

Dateline NBC

CrimeLess: Hillbilly Heist

.css-15opob5{left:0;position:absolute;top:0.8rem;} All Episodes

.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Women with Bleeding Disorders: Resilience, Hope, and Advocacy with Dr. Danielle Nance

Episode Transcript

Popular Podcasts

.css-r6mb8g{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:1;overflow:hidden;}Stuff You Should Know

Dateline NBC

CrimeLess: Hillbilly Heist

All Episodes

Women with Bleeding Disorders: Resilience, Hope, and Advocacy with Dr. Danielle Nance

Stuff You Should Know