More Than a Carrier: How Unexplained Injuries and Surgery Led Me to a Diagnosis - Amanda Gradzewicz

We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families.

• growing up with a dad with severe hemophilia A 
• invisible symptoms in teen years and surgery complications 
• being told “just a carrier” versus getting a real diagnosis 
• marriage, military life, and finding the right HTC 
• parenting a daughter who is a carrier and a son with severe hemophilia 
• the role of community events, conferences, and social media 
• documenting bruises, bleeds, and periods to advocate for care 
• mental health, exercise, and therapy as caregiver essentials 
• navigating public life with an invisible disease 
• future of treatment, gene therapy, and a hopeful outlook

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Special Thanks to Genentech for sponsoring this episode.

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Episode Transcript

SPEAKER_02 (00:00):
Welcome to the Hope Podcast.

(00:01):
My name is Jonathan James, andI'm excited today to host a
special episode about women withbleeding disorders and have a
great guest joining me, AmandaGraduitz, who you're going to
absolutely love her story.
As a little girl growing up witha dad with severe hemophilia,
she learned a lot about bleedingdisorders from an early age.
Later on, she had a son withhemophilia and then found out

(00:23):
that she herself was alsoaffected.
She's had a great impactfulstory, and I can't wait for you
to hear more about that in ourconversation today.
I want to say a special thankyou to our episode sponsor,
Janintec, for hosting thiscontent and more educational
information just like thisepisode.
If you haven't already, makesure that you like and subscribe
to our channel so that we cancontinue to provide more

(00:44):
educational content just likethis.
And we'll get into the episodenow.
Welcome to the Hope Podcast.
I'm excited today to get into animportant conversation with
Amanda Graduates.
It's great to have you.
Thank you so much for joining meon the Hope Podcast today.

SPEAKER_00 (01:02):
Thank you.
I'm happy to be here.

SPEAKER_02 (01:04):
Well, I'm really excited to dive into your story.
You have such an interestingbackground, and we're doing a
series right now for women withbleeding disorders.
And there's so much to unpackalong your journey of
discovering what it's like tolive with a bleeding disorder
yourself.
Uh, but gosh, your background isjust so full of twists and turns
and some really amazing uhthings that I'm really, really

(01:27):
excited to dive into and tolearn more about.
And and uh I think a lot ofgirls and women can identify
with some of the things thatyou've been through.
So thank you for doing this.
And uh I'm I'm really excited.
I think that there's a lot ofgood things for us to talk
about.
Uh let's just kind of start offwith if you will, just tell us
where you're from and how you'reaffected by a bleeding disorder.

SPEAKER_00 (01:48):
Um I am from Iowa, but I currently live in the
Carolinas with my husband andtwo kids.
Um my father had severehemophilia A, and so I'm an
obligate carrier of severehemophilia A.
Um, and now I have a daughterthat's also a carrier and factor
8 deficient, and my son hassevere hemophilia.

SPEAKER_02 (02:10):
Okay.
Wow, you know, it's like everytime you meet somebody with
hemophilia, you're like, oh wow,that's great.
I mean, it's not great, but Imean I'm so glad that we know
each other.
You know, so that's cool.
So I uh want to talk a littlebit about gosh, growing up with
um, you know, when you when youwere young and your dad had
severe hemophilia, obviously youwere aware of hemophilia really

(02:30):
your whole life.
I mean, probably since yourearliest memories, right?
So tell us a little bit aboutwhat that was like growing up
with a dad with hemophilia andwhat your understanding of
hemophilia was back then.

SPEAKER_00 (02:41):
Um my understanding of it, I guess, was kind of
vague, of course, until I wasolder.
Um, but I did know, I realizedkind of at a young age that my
dad was in pain.
Um, so I remember helping himput his socks and shoes on in
the mornings when he wasn't verymobile yet for the day.
Um and I remember helping him uhfind a vein and all of that

(03:08):
stuff for his medicine, but thatwas just our life.
He was my dad.
Um but my understanding was waspretty vague.

SPEAKER_02 (03:17):
Pretty limited, yeah.
Did you feel like I meanhemophilia was just always
there?
It was just part of your dad'slife, so therefore it was part
of your life, right?

SPEAKER_00 (03:26):
Yeah, and I don't I don't really feel like it um it
took a lot of our how do I saythis?
I don't really feel like it umwas like a big focus, I guess,
in the house.
My dad um would do his profyinfusions and he was kind of
slow in the mornings, but otherthan that.

SPEAKER_02 (03:48):
It wasn't like a topic you were always talking
about.

SPEAKER_00 (03:50):
Yeah, yeah, no, it was just our life, our family,
and our our jive.

SPEAKER_02 (03:54):
So yeah, that's interesting.
I think a lot of people, youknow, sometimes I know as a
person living with humophiliamyself, like I feel like, you
know, especially when you youget super involved in the
community and you're constantlyyou're talking about it a lot,
you know, it's like there issort of this sense of like, you
know, it becomes a focal pointat some point.
But I mean, you know, it's it'sso important to realize that

(04:16):
we're human and that we havegifts and talents and we have,
you know, a life to live thatdoesn't have anything to do with
a bleeding disorder.
And I think, you know, I'mconstantly encouraging people,
including myself, sometimeshaving to remind myself, like we
take our infusions so that wecan live our life, not be
completely consumed with thisthing we call hemophilia, right?

SPEAKER_00 (04:35):
Absolutely.
Yeah.

SPEAKER_02 (04:36):
So it's beautiful that your dad was like that.
It wasn't, it wasn't really likehis co constant conversations in
the house, right?

SPEAKER_00 (04:43):
Oh yeah.
And he would even um, I mean, hewas he had at least one crutch
most of the time from I thinkhis 20s on.
Yeah, even when my parents gotmarried, he had a crutch.

SPEAKER_02 (04:54):
Wow, like in the wrong on their wedding day.
Yeah, wow.

SPEAKER_00 (04:57):
Um so I never really it was just our normal.
I never really thought anythingof it.
And when we'd be out in publicat the mall or a gas station, if
someone asked, like, oh, whathappened to you?
He would just be like, Oh, youknow, playing football, or oh, I
wrecked my bike.
Like he would just make stuff upbecause he didn't want to get

(05:18):
into the conversation, which Ithink was it it was good.
He was lighthearted, had a goodsense of humor.

SPEAKER_02 (05:24):
Yeah, full confessions of uh an adult with
hemophilia.
I have probably made up my fairshare of stories too.
I I can remember in school, youknow, like when I was a kid,
even like being on crutches,going to school and stuff, it
was just so exhausting to try toexplain it.
I didn't know.
And so, you know, you're like,yeah, it was POW and flew out of
a plane, and you know, andeverybody was like, whatever,
you know, but you're just like,just leave me alone.

(05:44):
You know, just it's just thething.
I'm sure yeah.
Yeah.
That's cool.
So when when your dad was, youknow, in his day-to-day and and
even growing up with this, um,you know, did did he have times
where he was down for extendedperiods of time that sort of
influenced maybe your familyactivities and things that you
were doing in your life as yougrew older?

SPEAKER_00 (06:06):
Yeah.
Um when I started playingvolleyball in high school, I
guess is when I really kind ofnoticed that he wasn't able to
physically go to a lot of games.
Like, you know, he couldn't dobleachers and stuff like that.
So it really was dependent onwhere we were playing and the
setup and kind of how he wasfeeling.
Um, but that was really the onlything that I noticed when I was

(06:29):
older.
Um, every family has theirhobbies and their traditions,
and ours weren't running aroundplaying football or going on
runs and hikes.
Yeah.
So um, and we did we spent a lotof time outdoors.
We'd shoot hoops and all ofthat.
But um yeah, that was just ourwe found our things to do.

SPEAKER_02 (06:50):
Yeah, that's cool.

SPEAKER_00 (06:51):
Yeah.

SPEAKER_02 (06:52):
In your in your experience with growing up too,
I mean, did you feel like I meanyou said earlier that you didn't
feel like it was really anythingnecessarily out of the ordinary?
It was just your normal, sothat's what you knew.
But did you feel like that therewas times, especially like
playing sports and stuff likethat, that it you started to
realize like he wasn't able tobe there?
Was that hard for you?

SPEAKER_00 (07:12):
Yeah, around that time in high school, um, it got
a little bit hard.
Um I feel like I I understoodwhy he couldn't, but it was
still I felt like I I justwanted him to be proud of me,
right?
I wanted him to see what I wasup to and be proud of what I was

(07:33):
accomplishing.
Um so that there were sometricky times.
But he communication really himtelling me he was proud and
knowing what I was doing, and metelling him how the games went
and him asking made a hugedifference.

SPEAKER_02 (07:50):
Yeah, they probably still didn't they didn't have uh
video uh YouTube streaming post.

SPEAKER_00 (07:55):
We didn't have yeah, my family didn't have a video
camera and all that.
So I felt like he was missingout on a portion of my life at
that time, but we made it work.

SPEAKER_02 (08:04):
Yeah.
Do you feel like when you lookback on that, do you have like
reg was it like regretful, ordid you feel like that it just
it just was what it was?
And and you were able to justkind of realize that that that
was his life and that you justhad that was just the way it was
for y'all.
Is that yeah?
How did looking back on it?
How did you feel?

SPEAKER_00 (08:21):
Yeah, looking back, that's just that was our life,
you know.
Um he was supportive in the waysthat he could be.
And are the again the otherhobbies that we did and he
taught me a lot.
He built a lot of things, we'dplay a lot of board games, he
loved to cook and all of that.
So we had different ways toconnect.

SPEAKER_02 (08:41):
Yeah.

SPEAKER_00 (08:42):
And I think that was key.

SPEAKER_02 (08:44):
That's so important too.
I think, you know, for I knowfor me as raising my kids,
especially, I felt, you know,when they were really little,
like we, you know, they playeddoctor different, you know.
It was like they had the doctorsit out and it was like, you
know, I got a doll so we'regonna give an infusion today and
there's factor.
You know, it's like you're like,like as a dad living with you
know, bleeding disorder, I justI my heart hurt a bit for that

(09:08):
because I was just like, God, Idon't want this to be their
story.
Like, I don't want them to haveto think about hemophilia.
Sure.
And I can remember, you know, Iwent through a phase where I was
in a wheelchair for an extendedperiod of time, and I just felt
so limited.
I remember my wife, you know, Iwas just so I personally just
devastated by the idea that, youknow, here I am struggling, and
hemophilia is hitting our familyhard at this point in our

(09:29):
journey.
And I remember my wife saying,like, your ability to be present
and to stay connected to yourkids is all they're going to
remember.
Like, they're not gonnaremember.
And she had this little thing umwhere when I was in the
wheelchair, I had both anklesthat had that had been operated
on um and fused, and one thathad hardware removal.

(09:49):
And then the other, my rightelbow needed to be replaced, and
it was just a devastating set ofsurgeries that had to happen all
back to back.
And um, so all I could, I wassitting in this chair and all I
could use was one arm, my leftarm, and I was just like, I'm
useless.
Like I I really did.
I felt like as a dad and as afather, I just felt like I was
just it was pointless, you know,for my existence in a way.

(10:10):
And the emotional burden of thatwas super heavy for me having
young children.
And I can remember my my wifesaying, Nope, let me tell you,
she goes, This little left armright here is gonna be the nook.
And she was like, and mydaughter Bella was really small
at the time.
She was just a baby, and so shestuck her in the nook, and she
was like, See, she's gonna sitin the nook, and she's like, You
talk to her, and she's gonnaremember you being there for

(10:31):
her.
And I was like, I don't know.
I mean, for me, it was just likethis war going on in my mind and
and my heart.
And uh, but Tina to this day, mymy Bella, who's 16 years old
now, uh, she uh or 17, gosh,she's getting old.
Uh, but she says she's she's tothis day she remembers the nook,

(10:51):
and she doesn't really havethese scars and wounds like I
was feeling like she was gonnahave, you know, and so it kind
of sounds similar that yourjourney was like this, like you
knew it was present, but yeah,the war that was probably going
on in your dad's mind was notexactly the same thing that you
were thinking, right?

SPEAKER_00 (11:06):
Right.
And our experiences shape who webecome, you know, and who we are
today.
And I honestly um I had a veryjoyful childhood and I feel like
I loved helping.

SPEAKER_01 (11:21):
Yeah.

SPEAKER_00 (11:21):
So, like, you know, from my dad's point of view, he
might have felt like a burden,like, oh, I'm gonna ask my
daughter to run into Walgreensagain or whatever when I was old
enough to do like little errandsand him drop me off at the door
and all that stuff so he didn'thave to get out of the car.
Um but I loved helping.
And so some of the things thatwe think could scar us or burden

(11:46):
us, um, I feel like it gave me adifferent perspective.

SPEAKER_02 (11:49):
That's so cool.
Yeah.
That's okay.
It gave you purpose.
And purpose.
Yeah.
Do you remember how old you werewhen you first started helping
him do his infusions?
Like you're probably prettyyoung, huh?

SPEAKER_00 (11:59):
Um, so I would I remember helping him pick out
like veins and stuff when I waslike five.

SPEAKER_02 (12:05):
Wow.

SPEAKER_00 (12:06):
Yeah.
I just would think it wasinteresting, you know.
Little kids are interested ineverything, and dad's doing his
medicine, and he'd be like,which one?
And I'd pick them out.

SPEAKER_02 (12:16):
So that's so cool.

SPEAKER_00 (12:17):
Yeah.

SPEAKER_02 (12:18):
That's so cool.
I uh I think, you know, again,it's just interesting to me as I
as I talk to guys who are havingkids and they're, you know, this
this is something that's I thinkyou know, all of us kind of
struggle with a little bit isthis idea of like not wanting to
burn it was such a great lessonand such a great, you know, to
hear from you, just of yourmemories of that, of being like,
yeah, it was just part of ourlives and it was just something

(12:39):
we did.
And and a good reminder just tostay engaged with your kids,
right?
Is there anything you would telltell dads out there now, just
from your dads walking throughthat with your dad?
Anything you would encouragethem to think about?

SPEAKER_00 (12:50):
Um just be you, be vulnerable, be be open.
Um kids are resilient, yeah.
And you know, your dad.

SPEAKER_01 (13:02):
Yeah.

SPEAKER_00 (13:03):
So there's no one, I mean, my dad to this day is the
strongest man I've ever known,probably will ever known.
He fought through a life ofpain, you know, and witnessing
that I think was powerful initself.
And um so I think just beingyou, being being vulnerable.

SPEAKER_02 (13:24):
Yeah.
Wow, so good.
So tell me a little bit aboutyour journey.
So you're you're in high school.
Let's go through the timeline alittle bit.
So you you you're playingvolleyball.
That's like a passion of yours,right?

SPEAKER_01 (13:39):
Yeah.

SPEAKER_02 (13:39):
Did you start to see anything?
I mean, you know, you at somepoint your dad had a
conversation with you about thefact that there's a possibility,
I mean, in in this conversationearly on, is that you're
probably a carrier.
So obviously we know now,medically speaking, an obligate
carrier.
I really hate that wordobligate.
You're obligated to be acarrier.
But there's a sense though thatlike you know that you're

(14:00):
there's a connection, right?
So did you feel like you startedto see any symptoms or signs as
a teenager that you might behaving, you know, symptoms that
that maybe you didn't identifyright away, but like how was it
you're playing sports?
You're obviously very active,you know, and then as a young

(14:21):
woman coming into, you know,your teenage years of having
menstrual cycles and things likethat, uh, did you notice any
signs that made you curious thatlater made sense?

SPEAKER_00 (14:31):
Um yeah, it all makes sense now.
At the time it did not makesense.
I honestly just felt kind oflike an unsolvable mystery um
with little issues and littlebumps in the road that where
things just didn't go quite asplanned.
Um I had arthritis in my feet ofa 70-year-old when I was I was

(14:53):
told by an orthopedic specialistwhen I was 15.

unknown (14:57):
Wow.

SPEAKER_00 (14:57):
So um I ended up having surgery to help with pain
and to hopefully continueplaying volleyball.
And I had no treatment,obviously.
So my foot got worse.
And they didn't know why.
I was on crutches weeks longerthan the the surgeon planned.
They couldn't remove thestitches when I went in.
They had to like cut thebandaging after the surgery off

(15:22):
because it was all hardened likea cast with blood.
Oh my god.
And the nurse like finally gotit all off and was like, um, I'm
gonna go get the doctor and cameback.
And they were like, Yeah, wecan't take these stitches out.
So there were signs.
Um, and I just never knew why.
So I kind of just felt like aweirdo.
I just it was just all this likestuff that didn't really make

(15:44):
sense.
It didn't add up, and no onelooked into it, into the why.
Um so yeah, and my mom at thattime was taking me to like all
of my appointments and stuff.
Um, my dad, by the time I gotinto high school, uh his
mobility was was pretty low forgetting around, and he had

(16:06):
dementia, I think, to setting infrom being infected with HIV.
So my mom did a lot of that, andso my dad didn't really see with
his own eyes, and so I don'tthink he couldn't piece it
together either.

SPEAKER_01 (16:19):
Yeah.

SPEAKER_00 (16:20):
So yeah, and then with the menstrual cycles, all
of that makes sense now.
Looking back, um, they startedme on birth control very young
to help with the bleeding, andit did.
It did work, it helped with thebleeding, but it was just a
band-aid, you know.
Then when I got a couple yearsfurther, when I had the foot
surgery, I didn't heal properly,and then I had another surgery

(16:41):
for them to fix it, and it gotworse.
So my gosh.
Yeah, I was like, I'm done withsurgeries.
Done.

SPEAKER_02 (16:50):
And so that did that affect your ability to play
volleyball and be active?

SPEAKER_00 (16:53):
Yeah, I could the pain was so bad after the
surgery, it was probably triplewhat it was before surgery.
Oh my gosh.
My joint was completely frozenstiff um from uh the bleeding.
So uh I never I never playedafter sophomore year.

SPEAKER_02 (17:10):
Wow.

SPEAKER_00 (17:11):
Yeah.

SPEAKER_02 (17:12):
Did it feel like you were losing a part of yourself,
like not to be able to be activelike that?

SPEAKER_00 (17:17):
Yeah, it did.
Um I started picking up beingactive in other ways, just
getting into a gym routine andtrying to keep my body healthy.
And exercise feels good.
I it's really good mentally forme.
It's huge.
Um so I had to try to findthings.
I couldn't do lunges or plankingor push-ups or running with my

(17:43):
foot.
So it was a it was a curveball.
Yeah.

SPEAKER_02 (17:46):
Wow.
So um going back to your dad'sconversations with you though,
he's the one that told you thatyou were an obligate carrier,
right?

SPEAKER_00 (17:58):
Yes.
Yeah, I think I can't rememberexactly how old I was, but I'm
pretty sure it's around when myperiod started.
And he drew me a little diagramof stick figures and then the
chromosomes to tell me that Icarried it.
And I think too, my brother andI had been asking him questions
like, will I be on crutches whenI'm older and stuff?

(18:20):
So he felt like it was time.
And he just told me that I couldhave a son one day.
Not a daughter, a son one day.

SPEAKER_01 (18:28):
Right.

SPEAKER_00 (18:29):
Uh, that's affected like he is.
But he did tell me medicine'scoming a long way, and we just
manage with with medication.

SPEAKER_02 (18:40):
Yeah.
Wow.

SPEAKER_00 (18:41):
Life goes on.

SPEAKER_02 (18:42):
Wow, that's so good.
Did that scare you that youmight have a son with the same
thing that he had?

SPEAKER_00 (18:48):
No.

SPEAKER_02 (18:49):
And why why not?

SPEAKER_00 (18:51):
Uh well at the time, I think because of my age was
one thing.
And my dad was a great guy.
Yeah.
You know, he was a great idea.
Yeah.
Yeah.
Yeah.
So like if I have a a son likemy dad, I'm totally thrilled.
Amazing.
Yeah.

SPEAKER_02 (19:08):
Wow.
That's awesome.
Yeah, there's something in aboutthat, you know, I always say
that one of the things that's soamazing about people that have
lived with chronic pain is thatthere's an opportunity that
you're under so much strain andpressure for so long that the
people that sometimes peopletake that as a tool to embrace

(19:29):
and overcome adversity, right?
And and I do think that probablymore often than not, it's those
people that have fought thoseinternal battles, those internal
wars and overcome them thatbecome true heroes in life.
And so when you have theopportunity to meet one of them
or see one of them or walk withthem or be related to one of
them, it does seem to bring hopein a sense, because you're like,

(19:51):
wow, like there's this greatamazing man that I hope my kids
could be like one day.
You know, that's beautiful.

SPEAKER_00 (19:57):
Yeah, the insight, the perspective from everything
that he had gone through.
And I mean, all of all of us gothrough, you know.
It really really adds to yourcharacter.

SPEAKER_02 (20:08):
Yeah.
It makes you really focus onwhat matters in life.

SPEAKER_00 (20:11):
Yeah, the important things.

SPEAKER_02 (20:12):
So true.

SPEAKER_00 (20:13):
Yeah.

SPEAKER_02 (20:13):
So true.
So let's keep going down thetimeline a little bit.
So talk about your journey.
So we're we're we're you're highschool, you're playing
volleyball, now you've beendisrupted because you can't play
sports because of this thing.
Still don't know that you'reagain, we're getting away from
these terms, but you know,symptomatic is is the
terminology that had been usedin in the in the materials for

(20:35):
so long.
But still not putting two andtwo together yet.
But now you're getting to thepoint where you're getting ready
to graduate high school, you'regoing into college.
How is is it still disruptingyour your life?
How are you feeling about thattransition?

SPEAKER_00 (20:49):
Um, my foot has never been the same, but uh all
the other things, I was on birthcontrol, so uh things were
pretty managed through college.
And then um when I got into mymid-20s and met my husband, we
started dating.
Um, I of course told him aboutit, like just so you know, you

(21:10):
know, like if you want to keepdating or not, I gotta make sure
you're good with this.
How is that?

SPEAKER_02 (21:15):
I mean, that's I know that's awkward for
everybody.

SPEAKER_00 (21:17):
Yeah, he was very receptive.
He um it didn't really faze him.
Yeah, yeah, he's a tough guytoo.
I don't know.
I I got lucky.
Yeah, but um when we gotmarried, we decided to go to
education days with the one ofthe hemophilia chapters where we
currently lived in Colorado.

(21:38):
And he's in the military, right?

SPEAKER_02 (21:40):
Which is how you're gonna do it.

SPEAKER_00 (21:41):
Yes, we were yeah, we were stationed in Colorado.
And um, you know, we were therefor him to learn about what a
son could potentially have andhow he our one of our kids might
be affected.

SPEAKER_02 (21:54):
And is this before you have kids?
Yes.

SPEAKER_00 (21:57):
This was um around when we got married, the same
summer we got married.
Yeah.
Yeah, I couldn't, um, you know,my dad passed away when I was
about 18.
And so all that time had passedwith me being kind of, I felt
disconnected from hemophiliaaltogether.
So I wanted him to hearinformation from other people

(22:18):
and from the experts to learnabout it before we started
trying to have kids.
And uh when we were there tolearn about our future kids, uh,
this lady was like, Well, what'syour level?
And I was like, No, not me, youknow, like we're family planning
and blah, blah, blah.
And she's like, Yeah, but haveyou ever had any like extended

(22:40):
bleeding after surgery?
Have you ever had your tonsilstaken out or anything?
And I was like, Oh, yeah.
She was like, You need to haveyour level checked.
So I went to my military doctorand uh told him what I was told.

(23:01):
And you know, like I could beaffected and I had prolonged
bleeding after XYZ, and mymenstrual cycle was a nightmare.
And he drew me a similar diagramthat my dad drew me, but showing
me that I cannot be affected,that I only carry it.
And so I kind of went back andforth with him on it, and then

(23:24):
he ended up putting in thereferral.
So in Colorado, I had to see amilitary provider because of
where our house was.
Um, and so I had to have hisreferral to the treat hemophilia
treatment center, and I got it,and um yeah, my level came back

(23:44):
um, I guess symptomatic carrier.
I was on birth control at thetime, so it wasn't as low.
And then uh several years afterthat, my we had moved to a whole
different state state uh toNorth Carolina and I was
pregnant, so I never got alevel.

(24:05):
Um and it took until I was 36years old after having my son
who has severe hemophilia to getmy actual baseline level and get
a hemophilia diagnosis.

SPEAKER_01 (24:20):
Wow.

SPEAKER_00 (24:20):
But if it was not for that woman in Colorado at
that chapter event, I would haveno idea.

SPEAKER_02 (24:29):
I mean, maybe I would down the line now, but wow
and so when you when you hearabout this, is it like what's
going through your head aboutand your mind just about you're
thinking about your footsurgery, menstrual cycles,
obviously, but what are you Imean what are you thinking?
Are you th like do you instantlyput two and two together and go,

(24:50):
oh my gosh, like this is my footsurgery?
Or was it more like I don'tknow, maybe I need a doctor to
validate?

SPEAKER_00 (24:58):
Um I thought for me it really connected the dots.
All of it had to do withbleeding, uh, with a procedure
or my menstrual cycle, and thenum some bruising that I've had
would last a really long time.
Um so yeah, it really connectedthe dots for me.
I was shocked, and uh, but it umit made my events as a kid make

(25:25):
more sense, I guess.

SPEAKER_02 (25:27):
Yeah, did it feel validating like oh my gosh, this
all like connects.

SPEAKER_00 (25:31):
Yeah, like I knew I was weird.
There was something going on.
I'm just kidding.

SPEAKER_02 (25:36):
You're normal in our world, yeah, exactly.
You're like, yeah, you're partof the group.
Yeah.
Wow, oh my gosh.
Like I could only imagine goingthat long too before.
And so so you kind of breezedover having a son with with
hemophilia, but that was sort ofthe impetus behind going, okay,
now this is like this is this iswhat our life is, right?

SPEAKER_01 (25:58):
Yes.

SPEAKER_02 (25:59):
And so tell me a little bit about um, tell me a
little bit about the journey ofhaving children and then like
just unpacking that, like howdid that how did that feel?

SPEAKER_00 (26:09):
Um well, when we found out we were having my
daughter, um, I was worriedabout her being a carrier, but I
didn't really know uh the Iguess how all of the stuff
they're studying now, like howaffected she could be.

SPEAKER_02 (26:26):
And you couldn't remember the stick name figure
your dad drew exactly whichstick was which.

SPEAKER_00 (26:32):
So um then when I had my son though, um, I guess
we kind of went into likesurvival mode for a little bit.
I was really honestly, it wasweird, but I grieved my dad
passing a lot after I found outLiam had hemophilia.
Because I'm like, this is agenetic condition.

(26:53):
Like, we need grandpa here.
Like, I need like the my familyhere to help guide me, you know.
I felt kind of like a fish outof water.
What do I do?
Like, I I knew um my dadmanaging very well on his own
his hemophilia, but like, how doI do this with a baby, this

(27:15):
innocent little baby?
How do I keep him safe?
Um, so that really really turnedon mom mode and having to reach
out to people in the samesituation, um, other people with
hemophiliac kids and educatingmyself with current studies and

(27:36):
current medication and gettinginvolved was a saving grace for
me.

SPEAKER_02 (27:42):
And being in the military, you're moving around
too.
So it's not like you're at oneHTC or you're at one doctor or
even one chapter.
You're you're having to findthese resources on the fly,
right?

SPEAKER_00 (27:54):
Um yeah.
Well, so we've been lucky sincewe had the kids.
We actually haven't moved.
So we've been at the same HTC.

SPEAKER_02 (28:00):
That's awesome.

SPEAKER_00 (28:01):
Yes.
My husband's career path shifteda little bit when we went to
North Carolina.

SPEAKER_02 (28:05):
Okay.

SPEAKER_00 (28:06):
Um, so he made it so we should be able to stay there
until he retires.
What?
So it was a great move forfamily, especially a family with
medical conditions.

SPEAKER_02 (28:17):
Yeah, of course.
Yeah.

SPEAKER_00 (28:18):
Um, so we love our HTC.
The nurses are amazing.
You know, kids know them byname, of course.
And what a blessing.
Yeah.

SPEAKER_02 (28:26):
So we know so many m uh military families, it's just
like that they just know thatlike every few years they're
moving, and it's been like sucha such a hard thing to restart.
But even then, you're you'reeducated about yourself in North
Carolina, and then I mean inColorado, and then you move to
North Carolina, you getestablished there.
And uh and so that's great thatyou had stable care there.

SPEAKER_00 (28:48):
Yeah, and reaching out on social media, I mean,
it's really a great tool.

SPEAKER_02 (28:52):
It really can be.

SPEAKER_00 (28:53):
Just for connecting with people.

SPEAKER_02 (28:56):
You know, we've said for a long time that I, you
know, that that it's interestingwhen you're dealing with any
kind of rare disease, it makes alot of sense to be able to
connect online because you mayonly have a few hundred people
in one particular state that hasa specific diagnosis.
But if you can connect in thesegroups, Facebook groups or you
know, wherever, it seems like umthat's a that's a great way to

(29:16):
sort of connect.
Obviously, there'smisinformation out there too
that you have to be careful of.
But knowing your trusted HTC andgetting, you know, having
knowing where you're gettingyour source of your information
is important.
But also just building uhfriendships in the community
too.
Did you find that building thosefriendships over time really
helped you to feel moreconfident about what was missing

(29:37):
that your dad wasn't there?

SPEAKER_00 (29:39):
Yeah, absolutely.
Um just hearing other parents'experiences and that they made
it through and um how they didit and I it's it's amazing.
And also being a mom of toddlersis uh is a job.

(30:00):
And it is a very anxiety-riddenjob, even without hemophilia.
So meeting other moms withlittle boys with severe
hemophilia was like a relief tome.
Like I didn't feel like I wasthe helicopter mom.
Cause I mean, where we live, wedon't have friends that have
kids with conditions like that.

(30:21):
So sometimes I'm always like,where's Liam?
What's going on?
Wow.
What's he climbing on?
And other people are like, oh,they're fine.
They're just over there.
And, you know, moms in thecommunity get it.

SPEAKER_02 (30:33):
So it's very nice.
That's so great.
What would you say as far aslike people might be going
through that stage, theimportance of being connected to
even going to in-person events?
Like you mentioned the chapterevents.
I know you've been to somenational meetings.
Like what role do you think thatthat how how important is that
role in going connecting withpeople and networking with other

(30:54):
moms and other people in thecommunity for someone living
with a bleeding disorder ornewly diagnosed, even for that
matter?

SPEAKER_00 (31:00):
I think it plays a huge part for me, especially
after going to Hope Conferencelast year.
Seriously, some conferences yougo to and you feel almost like
you have a couple blue daysafterwards, because it's hard,
it's emotional.
You hear a lot of devastatingstories and stuff.
But the hope event was alwaysjust like glass is half full,

(31:24):
and we have hope.
And connecting with people andbuilding the relationships is so
good for mental health.
The face-to-face and friendshipsand socializing.
Yeah.
And I think we can all use alittle bit of help in that
category.

SPEAKER_02 (31:40):
It's so true.
I know it's been a lifeline forme.
I always say that, you know, thebest thing about being diagnosed
with a bleeding disorder is thecommunity that comes along with
it.
Yeah.
And there's been such a, youknow, um, you know, some of my
absolute best friends in lifeare in this community, you know.
And I have a lot of friendsoutside of this community too
that are unaffected that we keepdragging into this community

(32:02):
that uh we need their help too.
So, you know, but it's it isthat that surrounding of the
communal support that I thinkthat keeps us all afloat when
we're going through difficulttimes.
It has been my story, obviously,but um, but I think that's true
for all of us.
And I just like to encouragepeople anytime that there's
there's questions, especiallyduring those transition points,
you know, it's like the newdiagnosed, or even I mean, for

(32:24):
you, it wasn't like you wereblind going into this.
I mean, even you knew evenbefore you had kids you were
self-educating, you had yourdad's background, your own
story.
You know, there's like there'syou you were equipped in many
ways, far better than manypeople might be.
And and and yet still thatconnection to other people
who've lived that story, thereis no substitute for lived

(32:45):
experience, right?

SPEAKER_00 (32:46):
Absolutely.

SPEAKER_02 (32:48):
So good.
My grandfather used to say allthe time that that a man uh with
an experience is never at themercy of a man with an argument.
And there's some people outthere that just have like
education, but then there'sother people who have lived it.

SPEAKER_01 (33:04):
Yeah.

SPEAKER_02 (33:04):
And that lived experience is what creates
wisdom, right?
There's knowledge and there'swisdom.
Wisdom is the living it out,right?
And so I just think so often,like that's that's the people we
we need that.
And so, um, you know, shamelessplug for hope conference for
sure.
I we're getting ready to uhexperience that again here soon,
and and I'm I'm super excitedabout it.
But um, Orlando, Florida, not abad place to be.

(33:27):
Great place for families.
Um, and also in November is whenwe do our conference.
So, like, I mean, honestly, Ithink Orlando in August is
probably the most miserable.
But in November is extremelypleasant.
Like, people don't go there thattime of year.
But I'm like, let's go therethat time of year.
So that's great.

(33:47):
That's awesome.
So I want to get back to um, youknow, going through, you know,
where you are now because youfind out obviously your son is
severe, you're treating him,you're on a treatment plan, but
your daughter's not totally leftout of this equation either,
right?
So let's talk about her journeya little bit.
Where where are you where areyou at with that?
Because that's still you're kindof in the street.

(34:07):
We start at the beginning.
Yeah, let's go.

SPEAKER_00 (34:09):
Okay.
Um, so when Amelia was born, Iwe had her factorate level
checked, and it was normal.
It was in the 90s, so they werelike, oh, she's good, unless you
have issues, you know, we don'tneed to see her as a patient and
all of that.
Um when she was a toddler, shehad a lot of bruising.
So I asked to bring her back infor testing, a post-birth like

(34:33):
follow-up to get a baseline.
And um we didn't get one thefirst try.
She was she was a very plump,beautiful, beautiful girl.
And then when we got to aboutthree, they um tested again and
she was still in the 70s.
So fast forward a little bit, umI learned a lot through

(34:57):
community events and going toconferences that for girls,
really, it should almost be astandard to get the genetic
testing done.
Of course.
Just so that you know, um, evenwhen they're young, because some
people are having symptoms withsemi-normal levels.
And so we pushed for that and wegot a little bit of pushback

(35:19):
from um our center, and we justkind of stood our ground and
said that's what we want.
And if anything happens down thefuture and she's having
symptoms, we need this forinsurance.
And so we did it, and she was aconfirmed carrier, and um just
their most recent appointmentthis year, we got more of a true

(35:43):
baseline on her.
Um, it was the first time thatshe wasn't a total nervous wreck
for a lab draw, and sherequested that I do it.
Wow, wow at the hemophiliacenter.
So I was already infusing my sonthat day for his testing for his
labs before and after.
Um, so the nurse was like, sure.

(36:04):
And so I did her lab draw and itcame back lower, so a better
baseline.
So um it's been a road with her,but we have made so much
progress thanks to the communityand um learning continuously.

SPEAKER_02 (36:23):
That's so good.
So let's talk about your care,because I mean, it's clear that
caregivers put themselves lastoftentimes.
So you're a mom, you're carrycaring for these two kids,
you're you you're you'remarried, you got a lot going on,
right?
And so with all of this goingon, how about you?

(36:43):
Where are you at?

SPEAKER_00 (36:45):
Um I am just trying to blaze through, yeah, you
know, um keeping the kids safeand healthy and trying to
participate in things like thisto help other families.

unknown (36:58):
Yeah.

SPEAKER_00 (36:59):
Um I think the biggest thing for me to stay
grounded is exercise andmeditating.
And I have a great therapist.
I love my my mental healthappointments.

SPEAKER_02 (37:15):
That was awesome.

SPEAKER_00 (37:16):
Um, I really got in a routine of that when my
husband was deploying a lot inColorado.
Just um the fears of him beingoverseas and all of that, and
now it's helping me in in otherways.

SPEAKER_02 (37:29):
So that's so good.
Yeah.
And are you getting treatment onon demand or regularly,
preventatively?
Where are you at withtreatments?

SPEAKER_00 (37:36):
Um, I'm on demand.

SPEAKER_02 (37:37):
Okay.

SPEAKER_00 (37:38):
So um just for little procedures um and stuff
like that is what I've what I'veneeded factor for.

SPEAKER_02 (37:45):
Yeah.
And and having that knowledge ofknowing where your levels are at
and what your needs are whenanything arises or anything goes
kind of out of whack orabnormal, does that give you a
sense of confidence to know howto even speak up and advocate
for yourself in the midst oflike transitional times or any
things that may come up?

SPEAKER_00 (38:04):
Yeah, I would say that I'm still learning.
I feel like I'm learning aboutmy body because I went so long
without any treatment.
Um but yeah, the biggest thebiggest thing is to document
pictures and documentation andsharing that with your provider
and getting their input on howto best move forward.

SPEAKER_02 (38:26):
Yeah.
So good.
And and also like, you know, I II do think that for the sake of
documenting, like this issomething that we find is
something really difficult froman insurance point of view.
Uh it's super critical that youjournal those things as they
when things pop up and occur, wefind that sometimes those
journals are the only thingsthat allow you to sort of

(38:47):
overcome even some of theinsurance questions.
And when you have a son that'ssevere, sometimes you're it's
just kind of in inherent becausethere's just always something
going on.
But for yourself, you know, I Ihave found that that in
parenting, you know, I I havefour kids and two of which are
daughters who are affected aswell.
And it was a very difficultjourney getting them diagnosed

(39:09):
and getting them on the righttreatment plan and so on.
And in that journey, one of thethings that I've found is that
me trying to help them has alsohelped me take care of myself
better to some degree.
Yeah.
Have you found that to be thecase also?
Like make you a little bit moreaware of what you need to do for
you.

SPEAKER_00 (39:26):
Yeah, absolutely.
And also it's uh more of a adrive, internal drive for me to
make sure that I'm safe as wellbecause I need to be there for
them.
Right.
It's different than before kids.
Like, oh, it's just me.
Like, let's go do whatever andI'll be fine.
Right.
So yeah, it's it's definitelydifferent now.

SPEAKER_02 (39:46):
Yeah, yeah, that's good.
I want to talk a little bitabout um, you know, going back
to, you know, uh the marriagepart of the journey, because
obviously there's there's a lotto focus on with the kids,
there's a lot to focus on withyourself, but being married is
its own full-time job, andthere's a lot of worries and
fears there too.
Obviously, you guys handle thatamazing.

(40:08):
Your husband's a rock starbecause he was like, you know,
I'm gonna learn this, you know.
Um, but what what tips or anyadvice would you give married
couples out there who are alsojust trying to learn how to
navigate this?
Because there's there's so muchwithin the communication for
each other.
And of course, your husbandworks in a high-demand job where
he's putting his life on theline.
He's involved very, you know,with with deployments and things

(40:29):
like that.
So, so, you know, how do youmanage that in your own
communication internally and andjust keeping him aware of what's
going on and involved too?

SPEAKER_00 (40:39):
Um, I guess, like you said, communication.
Um, I fill him in on theappointments, and we're very
thankful for my chart because hecan just look at like hard
copies of like notes and testresults, and I can explain what
they said um in relation to theappointment, and it it's easier

(41:02):
for it to make more sense.
So it can be tricky when he haslonger trips and something
happens.
Um, but you know, you do the thebest you can.

SPEAKER_02 (41:12):
Yeah, yeah, it's so good.
Yeah, it's so good.
I think that a lot of people uhbefore they get married worry
about how am I gonna manage thiscondition with a partner, how am
I gonna manage this conditionwith someone else.
That's tough.
Just I mean, any marriage is youknow, there's there's rough
spots for everybody, right?
It's difficult to walk closelytogether, no matter who it is.

(41:34):
And and then and then you throwin like hemophilia in the mix
and then children and then allof the other complications.
It is not easy.
Yeah, and um, I do thinkcommunication plays a huge role
in that.
I love what you said about yourdad too, just that he was just
present and he was aware.
I think that there's a sense ofthat too, is it like you we

(41:54):
can't solve all the problems,but we can be aware and we can
be fully present in that, youknow?

SPEAKER_01 (42:00):
Yeah.

SPEAKER_02 (42:01):
One of my um favorite quotes is from uh a man
named Jim Elliott who said,Wherever you are, be all there.
And there's something about justbeing present.
Like I think sometimes like it'sfear is is a scary thing.
It's one of those things wherelike we avoid pain, we avoid
painful emotions, we avoid allkinds of things, but it's just

(42:22):
like you working out.
It's like there's this sense oflike, I know it's good for me
anyway, so I'm gonna I'm gonnado this, I'm gonna commit to
that, you know.
And and the same is true aboutlike relationally, I think is
that we we say sometimes like Iknow this conversation be hard,
like I just got a bad reportfrom the HCC or something.
You know, it's like, but we'regonna have this conversation
anyway.
As a mom raising a son with ableeding disorder, how has that

(42:45):
been different in contrast fromwatching what your dad went
through where he was on crutchesall the time versus your son
who's had treatment since theday he was born?

SPEAKER_00 (42:54):
Uh, it's pretty miraculous.
I always wonder what my dadwould say or like what he what
he's thinking, you know, lookingdown on us.
Um but I just I feel honestly inthe circumstance we're in, I
feel I feel really blessed.
I mean, we have treatment, it'smanageable, and he's gonna be a

(43:17):
healthy kid.
Yeah, you know, like yeah.

SPEAKER_02 (43:20):
So, you know, one of the things that I think a lot of
the people in the the communityhave, you know, talked about
struggling with sometimes isthat there's still an
opportunity for you know battlesthat you go through internally
that the rest of the worldaround you doesn't see, right?
We might call that likeinvisible disease.
But generations ago that it waskind of more obvious, right?

(43:44):
And have you noticed that it'sbeen at times hard to sort of
like cope with it beinginvisible in some ways?

SPEAKER_00 (43:52):
Yeah.
Um, you know, I never reallythought of hemophilia like that
until my son had his first majorbleed.
He had a hip bleed last fall,and it was a couple weeks before
Halloween.
So um we took them trunk ortreating at my daughter's

(44:13):
school, and I was pushing him inthe stroller instead of a
wheelchair.
And um thankfully I still havethe stroller.
And people just were kind oflooking at us, and my kids are
very tall, we're a tall family,so he looks older than he was.
He was about to be four, he wasthree at the time.
Um, and they just kind of wouldlook and they wouldn't put the

(44:37):
candy bucket towards him for himto reach the candy, and he'd be
kind of like, Oh, I can't seewhat's in there, what is there?
And everyone would just kind oflook.
And so that I honestly I left umthat event a little upset and I
was kind of heartbroken for himbecause he was hurting so bad.

(44:58):
And you don't want people tocoddle your kid, and you don't
want them to stand out either,but just the understanding so
that he could feel like theother kids and pick his own
piece of candy and things likethat.
It was very eye-opening um forme as his mom.

SPEAKER_02 (45:17):
Did he like process any of that with you?
Did he feel the same?

SPEAKER_00 (45:21):
Yeah, I think he he told me actually that he didn't
he didn't really like it.
And he asked me why he couldn'tpick all his candy.
I know it made me sad.
Um yeah, it's just it's like weneed to mark it as a wheelchair
or what, but then you don't wanthim to stand out either.

(45:42):
So you want people to know butnot um go over the top.

SPEAKER_02 (45:48):
Yeah, I guess.

SPEAKER_00 (45:49):
Just the awareness.

SPEAKER_02 (45:51):
Yeah, it's a weird thing having to be empowered to
be able to explain that there'slimitations without overdoing
it.

SPEAKER_00 (46:01):
Right.

SPEAKER_02 (46:02):
Right?

SPEAKER_00 (46:02):
Yeah.

SPEAKER_02 (46:03):
Because you don't want you don't want like pity.

SPEAKER_00 (46:06):
Right, exactly.

SPEAKER_02 (46:07):
And you don't want him to feel like he's gotta be
less than.

SPEAKER_00 (46:09):
Yes.

SPEAKER_02 (46:10):
But simultaneously, like there are times where you
know, there's a limitation andit's okay.

SPEAKER_00 (46:17):
Yeah, absolutely.

SPEAKER_02 (46:19):
Yeah.
That whole invisible diseasething is like a really I find it
to be really probably morechallenging now, especially for
you know, this we have thiswhole new generation of people
now that are just been profitheir whole lives and never had
to deal with the publicinteraction really, you know.
I can remember um when I firststarted college, like I didn't
want, you know, starting over,new school, obviously, and I

(46:42):
didn't want anybody to know.
I mean, I didn't want anybody toknow.
And so every time I had to be oncrutches, I just like hid.
You know, I just didn't want tobe out in public, you know.
And uh my friends would be like,you disappeared for like three
or four days or five days, likewhere'd you go?
You know, and it's like, well, Iwas sick, you know, and I would
just leave it at that, you know.

(47:03):
Yeah.
I can remember actually, um,even as a young adult, um one of
our one of our early uh boardmembers was a friend of mine
from college, and he was like,he was like, Yeah, I didn't like
for the first 20 years I knewyou, I didn't even know you, I
didn't even feel it.
You know, it wasn't until youwere like going through
surgeries that I realized thatand he thought I thought you had
something really horrible andyou were dying, you know.

(47:23):
And I was like, gosh, you know,there is a happy medium
somewhere in there to be able tosort of explain to people and
advocate, share your story,right?
Yeah, and to be confident inyour own skin.
I think we all have to deal withthat, even if it's not about a
bleeding disorder.
It's like you have to get to theplace where you're comfortable
in your own skin.
Yeah, and you are who you are.
And we were talking about beingtall people earlier, you know,

(47:44):
it's like tall people problems,right?
Like you have to get comfortablein being a tall person, you
know, and and simultaneously atthe same time, like you don't
want to just you you're not youdon't want everybody having to
accommodate for you, you know.
And so as your son has grownolder, how do you feel like has
that has that come back up or isthat something you're still
processing through?
I mean, I'm he he will have, I'msure, repeated, you know,

(48:08):
conversations about that.
But do you feel like that he'she's growing in that too?

SPEAKER_00 (48:12):
Or yeah, um I kids are resilient.
I think that he um as long as hecan, you know, participate with
the other kids and all of that.
I think his from the hip leadtoo, his understanding, I think,
um, which was is good and it'salso hard to see as a parent,

(48:33):
his understanding of hiscondition of the hemophilia is a
lot broader now.

SPEAKER_01 (48:39):
Yeah.

SPEAKER_00 (48:40):
Um, so that's good.
Yeah, I think.
And yeah, I don't I'm trying toteach my kids um be kind to
everyone you meet.
Everyone's fighting a battlethat you know nothing about.

SPEAKER_01 (48:56):
So true.

SPEAKER_00 (48:57):
So that's really important for invisible
diseases.
And some people need help withtheir balancing their sugar, and
some people need help withbalancing their factors.
So, you know.

unknown (49:09):
Right.

SPEAKER_02 (49:10):
Or in my case, both.
You gotta balance all of it.
That's great.
I I you know that with I justthink with it goes back to the
community thing.
With your experience, havingyour dad, having the community,
having all these resourcesaround you, you can't help but
but no matter where you turn,you're gonna be he's gonna be

(49:31):
great.
He's gonna be safe.
He's gonna win.
He's gonna do so, he's gonna goso much farther than even your
dad was able to go.
He's gonna do so much more.
Yeah.

SPEAKER_00 (49:42):
We want them to thrive over survive.
Yes, absolutely.

SPEAKER_02 (49:48):
Yeah.
Might have seen one of those.

SPEAKER_00 (49:49):
Our favorite t-shirt.

SPEAKER_02 (49:51):
That brings me kind of to to one of my last
questions, which was really, youknow, thinking about your dad.
Um you know, uh, I you know, itit just begs the question.
I mean, like, what do you thinkthat that him saying all of
what, you know, what do youthink he would think about all
of what you've walked through sofar?

SPEAKER_00 (50:14):
Uh I I think I hope that he would be uh proud of
everything that we're doing forthe kids.
And, you know, you do what youcan to keep your kids safe.
So um in bringing awareness tohemophilia and women with
bleeding disorders, I think he'dbe very proud.

(50:36):
And he'd probably say, um, inregards to taking care of my son
with severe hemophilia, he'dprobably say something like, You
were built for this or somethinglike that.
He always thought I was gonna bea nurse or something.

SPEAKER_01 (50:47):
But there you go.

SPEAKER_00 (50:48):
What do you know?
Now I do phlebotomy withoutphlebotomy school.

SPEAKER_02 (50:52):
So that's awesome.
Yeah, that's so good.
That's so good.
Uh, you know, as far as youknow, the you know, this really
your story is so um, you know,hemophilia on every side, right?
Your dad, your son, yourdaughter, yourself.
When I think about women, youknow, and the and just the

(51:13):
journey of unpacking thisdiscovery of like, okay, I'm not
just someone that carries amutated gene.
I'm actually somebody thatexperiences internal bleeding.
I'm someone that it that and andwe know that I hate to say that
the s we used to say all thetime the science hasn't caught
up.
I I think that's false.
I think the science has caughtup.

(51:34):
I just think that you know thethe system hasn't caught up is
probably a better way to thinkabout it.
But when you think about that,you know, like what would you
say, what advice would you giveto women who are out there that
have been told that they're justa carrier?

SPEAKER_00 (51:51):
Um I would say that if you think anything might be
abnormal, to document it.
Take pictures, take notes.
Um if you have, if you sprainyour ankle, you know, like
document the healing process tomake sure that it's within
normal limits and you'reswelling.
If you have swelling, you know,snap pictures of it because you

(52:13):
go into the doctor after it'shealed, they're not gonna know
how to handle the information ifthey don't see it.
So um I think that that's reallyimportant.
And then also tools.
There's tools in the community.
There's a lot of great resourceson the Hope website, there's a
lot of great resources on theNational Bleeding Disorder

(52:35):
website, MBDF.
Um, they have a new periodtracker and all kinds of stuff
that you can use to make surethat you're within normal limits
and at least track that so youhave information to bring to
your provider to work with themto see if you need treatment or
not.

SPEAKER_02 (52:53):
That's so great.
I'll make sure that we put thoselinks in the descriptions on
this podcast episode as well sothat people can go to them.
But there really is a greattracker that we were talking
about earlier about themenstrual cycle tracker that I
think it's on HFA's website,Human Philly Federation.

SPEAKER_01 (53:08):
Yes, yes.

SPEAKER_02 (53:08):
And they have a they have a really great way to sort
of document and track, you know.
I we we have one of our boardmembers is actually an
obstetrician, and he discoveredso many women in his practice
that were undiagnosed withbleeding disorders.
And he helped a lot of women getdiagnosed before he retired.
But one of the things that hesays all the time is that it's
it's length of day, like numberof days, but also volume.

(53:30):
And you have to be able to, whenit comes to menstruation, a lot
of people only believe that it'slike, oh, this is just we just
bleed heavy in my family orsomething like that.
But it's like tracking thatstuff and and forming a language
even around what that is forwhat that means for you, I think
is important.

SPEAKER_00 (53:47):
Absolutely.

SPEAKER_02 (53:47):
And um, he talked a little bit about in a in a
matter of fact, we have anotherpodcast episode that uh we'll
link to this as well that hadwhere he talked a little bit
about like if you're more thanthey say three to five days is
normal, but like if you're morethan three days, you should
start being suspicious.
And then if you're changing, youknow, pads or tampons or
whatever uh frequently, like youneed this is something that you
need to be thoughtful about,right?

(54:09):
Absolutely investigate.
Yes, ask questions, get curious.

SPEAKER_00 (54:13):
Yes, yes, get curious.

unknown (54:15):
Yeah.

SPEAKER_02 (54:16):
And and I know it's it's awkward too.
I just you know, I I I'd like tojust shameless plug for all the
guys out there that might belistening to this.
Like, sometimes it's a littlebit awkward to have these
conversations, but I I'mconfident that your dad, if he
had the knowledge and theopportunity, he would not have
shied away from this.
He would have been like leaninginto this conversation, right?

SPEAKER_00 (54:35):
Yeah, it's medically necessary.

SPEAKER_02 (54:36):
Absolutely.

SPEAKER_00 (54:37):
You know, you have to think of it as as medicine
and taking care of your health,even though it is your period.
I mean, that's that's scary.
It happens every month.
Right.
So it could be bad.
Yes.
Yeah.

SPEAKER_02 (54:51):
Yes, you have a bleeding episode every month.
That's one of the things I thinkwe're trying to also help maybe
we're we're hopeful to move theprogress in the direction of
this concept that um we justrecently had a had an interview
with um a leading f researchphysician who talks about this
very, very thing about howimportant it is to understand
that for women that you have ableeding episode every single

(55:14):
month.
And so often it's sort of likepushed off as being, yeah,
that's just routine.
But if it's abnormal, is thatroot is that normal, you know,
and so you but defining thedifference between abnormal and
is very personal.
Like you have to get a languageand comfortable with being able
to talk about it in you know,with your physicians and and

(55:34):
that.
So uh, you know, I I just thinkthat there's so much more to
come.
And when you think about thefuture, you in your lifetime,
Amanda, you have seen so manychanges from your dad, like the
way your dad was treated, theway he took care of himself
versus the way your son istreated versus the way you're
treating.
That's amazing.
Like when you look forward intothe future and think about your
kids and maybe their kids andthe future of of the bleeding

(55:57):
source community, I mean, whatdo you think?

SPEAKER_00 (56:02):
Um, I think that we have a lot of a lot of hope.
I think that we have a brightfuture.
We have a lot of treatmentoptions.
They're coming out with genetherapy.
Umophiliac's lifespan is greatlyimproving.
Again, I think my dad would beamazed.
The things that my four-year-olddoes and just hops up out of bed

(56:26):
the next day, you know?
It's it's great.

SPEAKER_02 (56:30):
It's amazing.
Well, thank you so much for justyour courage and your
willingness to share your storyand your journey with us.
Um you know, I know that it'sthere's a lot to a lot of
vulnerability that it takes andto to share, you know, the
details of what you've walkedthrough from, you know, uh just
just the hero that your dad isand was, and and just the

(56:53):
warrior that you've become.
I know he's proud.
Oh, thank you.
I'm so thankful to be able towalk with you and get to know
you.
It's funny, you know, you youyou think about it, we would
never have met, you know, manyof us in this community would
never have even met had we nothad this diagnosis.
So I know.
In a sense, it's grateful forI'm grateful for something
that's really brought us alltogether, right?

SPEAKER_00 (57:12):
Absolutely.
Me too.

unknown (57:13):
Yeah.

SPEAKER_00 (57:13):
Thank you for having me.

SPEAKER_02 (57:15):
Yeah, of course.
Well, I really want to say a bigthank you to Amanda and to uh
everyone who's been watching.
If you haven't yet liked andsubscribed, please do that
today.
And we'll see you in the nextone.
Thanks again for joining us forthis important conversation.
I hope you got a lot out of it.
I certainly hope that you get achance to share this with a

(57:35):
friend or family member whomight be experiencing similar
symptoms.
You can always like andsubscribe to help us to
encourage the algorithm to passthis information on to more
people just like you.
And we'd love for you tocontinue to listen to more
episodes coming up on women withbleeding disorders and more
important content that we hopeto provide you over time.
Once again, I want to say a bigthank you to our episode
sponsor, Janintec, for makingthis episode possible.

(57:58):
Without their help, we literallycould not do what we're doing.
We appreciate their support, andwe hope to see you in the next
one.
Take care.