September 2, 2023 • 34 mins
WE'RE BACK!!! After a brief hiatus while planning and organizing the 2023 GRF Conference, Bruised Not Broken: Life with Glanzmann Thrombasthenia is back.
This episode is slightly different than other episodes, and that's because not only were we able to record it together in person, but we sat around a table and just had a conversation about growing up with GT, transitioning to adulthood, and looking toward the future.
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Episode Transcript
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Taylor (00:00):
Welcome back to Bruise Not Broken, life with Glansman's
thrombocenia.
For those of you who are new tous, Glansman's thrombocenia is
an extremely rare autosomalrecessive disorder of the blood,
in which platelets lackglycoprotein 2b3a.
Hence, no fibrinogen bridgingcan occur and bleeding time is
significantly prolonged.
GT can be life threatening andis estimated to affect 1 in 1
(00:22):
million.
This podcast is presented by theGlansman's Research Foundation
and myself, Taylor, and Peter.
This episode is a bit differentthan past episodes.
We recorded this episode sittingaround a table with one
microphone and five young adultsliving with GT.
They were gracious enough to sitdown with us after the first
full day of sessions at thisyear's GRF Educational
(00:43):
Conference.
Our guests that evening wereLouisa, Quinn, Julia, Emily, and
our very own Peter.
Without further ado, Our specialconference episode, Alright
guys, so we are at theconference.
We're in Boston.
(01:03):
It is Thursday night.
We had our first day of sessionsand tonight, today, whatever,
whenever we're posting this wehave Emily, who is a board
member.
We have Julia, who you've heardfrom before.
We also have Louisa and we haveQuinn.
Louisa, you are 16, right?
(01:24):
how old are you, Quinn?
You're 19 now?
Yeah, I'm 19.
Okay, perfect.
So you just had your first yearof college, Quinn tell us I
guess about your transition awayfrom home
Quinn (01:37):
It's been, it's been interesting.
Yeah.
I didn't really have very manyexpectations going into it, but
it was It was definitely superinteresting.
I went to a school that I loveat Ohio University.
And my parents went there.
It already felt like home.
I know the campus very well.
And I was kind of just excitedto have a fresh start.
(01:59):
Be around people, like newpeople I've never met before and
meet a lot of new friends and itwas super interesting going from
a small town into, I mean, asmall town but a college with
thousands of kids that I don'tknow and a lot of people knew of
my bleeding disorder in my smalltown and now I'm going somewhere
that basically no one knows andit's, it's pretty nice and I
(02:23):
don't have to tell people if Idon't want to and it just I
thought it was kind of scarygoing away from home.
It's about a three and a halfhour drive.
That's not too bad.
Taylor (02:34):
But it's, It's enough distance to where people don't
necessarily know who you are.
But it's not too far where ifthere's an emergency you can't
make it home, right?
Quinn (02:44):
Yeah, definitely, but I also didn't have a
Taylor (02:46):
car so.
Oh, no.
I was kind of
Quinn (02:49):
just stranded there, but it wasn't it wasn't bad I didn't
really have any Bad incidents oranything like that.
It was everything was wentpretty smoothly.
I had a lot of fun Met a lot ofnew people met some good
friends.
I'm still in contact with andI'm super excited to go back in
about a month
Taylor (03:09):
well I know Julia had kind of a similar experience
when she went off to college.
She was ready for people not toknow who
Emily (03:16):
she was.
Yeah, almost
Julia (03:17):
exact type of experience where it's like everyone knows,
like, oh, you're the kid withthe bleeding disorder, and then
you go to college and you'relike, oh, I can just be me.
Taylor (03:27):
And then Emily ran across the country.
Yeah.
So nobody knew who she wasreally at all.
Nope.
Nobody knew anything.
Did you find yourself kind of ina similar situation where it was
like, Ooh.
Okay, I don't have to tellpeople I have
Emily (03:43):
GT.
Julia (03:44):
Yeah, cause even with
Emily (03:45):
undergrad I was about an hour and a half away from home.
So, nobody
Julia (03:49):
really knew anything there either.
Yeah.
And then just moving across thecountry was even nicer.
Taylor (03:55):
Well Louisa, so what are you looking forward to?
Because you, I mean, you're not,you just moved kind of sort of
recently to Texas.
So you're starting off in like anew area too.
How was that for you?
Yeah,
Louisa (04:10):
It didn't really feel too different to me.
The only transition was likeafter I moved, these were some
of my first few years of publicschool.
So there's like a lot more kids.
I never really had any issues.
Like, I don't necessarily tellpeople I have anything.
Like, if someone, like, sees thebruises on my legs, they'll be
like, oh, what happened?
Just like, Oh, I have a bleedingdisorder.
Like, that's it.
(04:31):
And they don't really like bringit up.
If I have a nosebleed, like myteachers are okay with it.
We have like a meeting at thebeginning of the school year to
explain it.
I have school accommodations andI can basically just do
everything everyone else can do.
And I didn't really have anyissues with needing to feel like
I have to hide it, but I also, Idon't really talk about it that
(04:53):
much, but if I have an injury,like.
It usually makes sense toexplain to people why it's
probably worse than what they'veseen before.
But I'm a pretty, like,independent person, so I think
I'll be fine when I go tocollege.
Plus I'm planning on goingpretty far away.
I don't want to go, I don't wantto do school in state.
(05:15):
So I'm Where
Taylor (05:16):
are you going?
Louisa (05:16):
So I want to go to University of Washington.
Which is...
Okay.
It's pretty far, but also, like,my parents can visit.
Both my parents love Seattle.
Yeah.
And it's, I'm sure there'spretty good hospitals there.
It's not like I'd be completelyon my own.
But I'm, I'm, I
Taylor (05:36):
think I do fine.
Well, it's a bigger city too, soyou'll have an easier time kind
of finding a team and stuff tooin place as well.
Now, that's something that Iwanted to ask you, Quinn,
because you're in a smallcollege town.
So, are you, did you find a newteam when you went to that town?
Or are you staying with yoursame team that's three and a
(05:56):
half hours away?
Yeah,
Quinn (05:58):
so I stayed with the same team.
We do have a hospital.
In Athens, at OU, and it's, it'sabout a mile off campus, so
it's, it's not too bad, I can gothere if I really need an
infusion or some labs done, butto be honest, like OU isn't very
good with kids withdisabilities, they won't they
won't give me my medicine, theywon't, they won't really have
(06:19):
anything to do with me, so, ifI, if I want to Or if I have to,
I'll just go to the hospitaloutside.
It's not too bad, but I'mstaying with my crew and in
Cleveland, and they're reallygood.
They have other GT patients.
They know what they're doing,and I'm just really happy with
them.
Taylor (06:38):
Yeah.
No, you had to find a whole newteam when you went out to
California.
I did.
And that was your first timedoing that.
Yeah,
Emily (06:46):
and it was my first time kind of doing all of my own
medical stuff, like alone.
I mean, thankfully, there's a GTfamily that lives 15 minutes
from me who has been like mybackbone of support out there so
they hooked me up with, like,their hemophilia treatment
center.
Yeah.
So that transition was kind ofeasy for me because they kind
(07:11):
of, like, Took me under theirwing and put me into the...
Taylor (07:15):
I'm in my 30s and I still have a hard time, like,
tracking down specialists that Ineed or even picking up the
phone and making thoseappointments.
So to do that in your early 20swith something that you...
You know, have to absolutely do.
It's a little bit intimidating.
I can only imagine.
Peter still struggles as wellwith
Emily (07:39):
that.
So none of y'all feel like, you
Taylor (07:42):
know, it's not something that, Other people don't feel
because in well into your 30s,you're still going to kind of
get that anxiety picking up thephone and trying to track down
the doctor and especially tryingto find like the right one to
Quinn (07:56):
that's something that scares me like transitioning out
of college, trying to find a newspecialist somewhere.
I'm probably going to be workingout of state.
I have to find a new hospitalthat knows my needs and I have
to figure out insurance toobecause My saint of a mother has
been doing all that stuff forme.
Yeah, so it's gonna be it'sgonna be pretty tricky.
(08:18):
I think move out
Taylor (08:20):
Julia's got that coming up soon, too.
And like I said like it I'm inmy 30s I have two kids like I
don't know anything aboutpicking insurance.
So I can't even imagine what youknow, the anxiety that goes into
that especially finding one thatcovers your medications and
(08:41):
stuff like that because Novo 7is not cheap and, you know,
there's some stuff that is usedoff label as we learned today
and getting insurance companiesto pay for that type of stuff is
kind of scary.
Well guys the majority of y'allhave all been in the same room
before at past events, right?
(09:02):
So what was the, when was thelast time that you all saw each
other in person?
Austin?
How many years ago was that?
Well, okay, so here we are fiveyears later.
What do you, what do you think?
I mean, y'all are all five yearsolder.
Louisa (09:16):
No, I actually like...
I understand more of whatthey're talking about.
I don't get bored of it aseasily.
Because I feel like if I waslittle, like, I would just sit
there and not really understand.
I'd just be like, oh, whatever.
But, but now I can actuallyparticipate in the
conversations, especially sinceI've had more experience with
bleeds, especially in the pastfew years.
(09:36):
So, now I know a lot more than Idid before.
So, it's a better opportunity.
Yeah.
Quinn (09:43):
Yeah, I think, same thing as Louisa.
I, I think I like, soak in morenow that I'm older, now that I
can comprehend what they'reactually saying.
Mm hmm.
And I also feel that, like, I'mmore comfortable with GT now
than I was five years ago.
Like, I would struggle mentally,and I, it was a big identity
(10:03):
thing for me, and it was hard toidentify as, like, having a
bleeding disorder.
Mm hmm.
But now I feel more comfortablewith it, and it's kind of just
my normal now.
Taylor (10:15):
What do you think changed?
Like what do you, just growingup in general and maturing or
just,
Quinn (10:21):
Hey, I think it's maturing in time.
Time heals all.
And like, I was like when I waslittle, I was super torn up
about having a bleedingdisorder, being different and
not fitting in with the otherkids.
Now that, like, time has passed,like, I really don't care.
I don't care about fitting in.
I'm completely happy with who Iam and I wouldn't change it for
(10:42):
anything.
Taylor (10:42):
That's awesome.
So, no pressure or anything onany of y'all's shoulders, but
you do realize that, like,you're, like, the next
generation of GT.
After you, there's just likeyoung, young kids and then
before that I think there's, Imean, Peter, Adana, and then
everybody else is much older.
So, y'all are kind of the futureof Klansmans and really helping
(11:08):
other kids who are much youngerthan you.
How do you, how do you feelabout that?
Because this is such a raredisorder and there aren't very
many.
You know, people that these kidscan talk to, and I know that you
know, Emily's always been greatabout talking to other people
and stuff, but you two Quinn andLouisa, recently y'all have kind
(11:32):
of really stepped up, and that'sa lot to kind of take on.
Louisa (11:37):
Well I was, I always get people like, telling me like,
after like they know I have adisorder, they're like, Oh,
maybe you should be a doctor orsomething.
Like, I don't know.
First of all, I'm alreadydealing with whatever I have.
But also, I prefer to helppeople in other ways.
So, through this, like, I'm ableto do that because I already
know what it's like and I knowwhat's helped me in the past.
(12:00):
And I like being able to likegive people advice.
Like, even people without GT,like, they have a nosebleed.
Like, I know what to do to helpthem.
Like, if they can't get it tostop.
And it's, it's like, it's verysatisfying.
Like, when you're able to likehelp people like that.
Even if it's not in like adirect way, like being a doctor.
Taylor (12:16):
Yeah.
Well, I'm sure you're both verycalm in a crisis.
Which, which is a really goodquality to have.
Because, I mean, living with GT.
Your entire childhood is almosta crisis.
So now since y'all are like thenext generation and kind of like
the younger, the younger onesand stuff, you really have the
(12:39):
best insight as to what youthink could help the future
generations.
What is something that you Wasavailable to you just within the
GT community at that time?
I
Louisa (12:54):
Know like Like I have I don't have to get my blood drawn
very often But if I had known,like, earlier, like, better
tactics to help with that, like,I used to do numbing cream,
didn't really work that well forme, now I do cold spray, and I,
I've learned that, I know thatit's a difficult thing for a lot
(13:16):
of people to have to constantlybe poked, but it hurts less when
you're calmer about it, and Iknow that it's hard to be calm
sometimes, but as you As youcontinuously do this, like, you
will, you will start to becomemore comfortable with it,
Quinn (13:35):
I think, I, I wish somebody told me that, like,
it's okay to be different, andnot fit in with other people,
and it's probably better to notfit in with other people
because, You don't want to belike everyone else.
Taylor (13:47):
Average is boring.
And you always have a reallygreat story to tell.
Quinn (13:52):
I think comedic relief is the best coping method.
Taylor (13:56):
Yeah, okay, so.
I know I'm used to it andeverybody else in this room is
pretty much used to it becausewe're around y'all, but When you
make a self deprecating jokeabout your bleeding disorder in
front of other people who don'tknow you all that well What
Emily (14:14):
is typically the response?
Julia (14:17):
They go like, wow, that was dark.
Taylor (14:20):
I'm like,
Emily (14:21):
sorry.
Taylor (14:23):
Well guys, so do you, now speaking of physical
activity, but does anybody elseat this table, do you take into
account like when you.
When you're out doing somethingor whatever, like does any, does
GT stop you from doing anythingin
Louisa (14:40):
particular?
I think sometimes, like I wentto Greece last summer and I got
bruises on my legs and petechiajust from walking.
Cause it was like all day.
And I was, it was kind ofpainful, but I was fine.
I just like, I try to do what Iwant to do just kind of with
accommodation.
(15:00):
I'm trying color guard this yearwhich, cause I need to get a P.
E.
credit.
So I think the only issue Imight have with it is the heat.
But my iron levels and myhemoglobin are good right now,
so I should be decently okay ifI drink water.
And like bruising my hands, butI'm pretty sure I'll be allowed
to wear gloves.
Taylor (15:21):
What about you, Quinn?
Jumping out of any planes soon?
That's actually
Quinn (15:25):
on my bucket list.
I do it as
Emily (15:27):
fast as
Taylor (15:28):
I can.
Isn't it on yours?
Yeah, it's on Peter's too.
I tend to be pretty
Quinn (15:31):
impulsive and like, just do what I want whenever I want.
Taylor (15:34):
No one at this table understands that.
At all.
Quinn (15:38):
But at the same time, I do think of GT a lot.
Like for example, my friends incollege, they would always have
boxing matches just in ourdorms.
And they would always be like,Quinn, like it's your turn, you
gotta do it.
And I'm like, I think I'll sitout.
But sometimes I'm like bummed,I'm like, I kinda wanna box.
But, but, thinking back on it,I'm like, So glad I did not join
(16:02):
in on the boxing match.
Taylor (16:03):
Do y'all feel like you are prepared for handling this
as adults one day by yourselves?
Yeah, I
Louisa (16:11):
think so.
It's like, especially for me,since I haven't had any issues
for quite a while now the onlything I'll get is like
nosebleeds, but I just like hopefor the best that I don't have
to deal with anything else Ican, I don't know, I, I don't
really want to learn how to selfinfuse I feel like that would be
difficult for me, but I don'tneed Nova 7 that often anyway,
(16:34):
so, I don't know.
I usually just need it like inthe hospital, so like I don't
have to be the one to do that.
Right.
So, I, I just need to learn howto deal with everything else,
which I've basically alreadydone, so.
Taylor (16:46):
I know Julia gets nosebleeds.
Emily, you don't typically get alot of nosebleeds, do you?
I
Emily (16:53):
get nosebleeds on occasion.
Mostly I think it has to do withthe
California
Julia (16:57):
heat.
But throatbleeds
Taylor (16:59):
are my...
I was about to say, that's,that's your forte.
Yeah.
Louisa, what, are you dealingwith more nosebleeds or are you
dealing with more like throat,throatbleeds?
I had a, I
Louisa (17:10):
had a throatbleed like once.
Like I used to cut the inside ofmy throat.
Mm hmm.
It's awful to deal with, but Ideal with more nosebleeds now,
especially like that's probablythe only thing I have to deal
with, aside from like bruising,but it usually happens at night.
So I'll just get a tissue andthen like the nose clamp and
then put it on and just go backto sleep and hope it's stopped
(17:33):
in the morning but sometimeswhen I'm outside and it's really
hot, I feel like I'm going toget one, but most of the time I
don't.
So, I just it seems random forme, so I just kind of hope I
don't get one when I go outside.
But I know how to deal with itif I do get one, so.
Taylor (17:51):
Now, Quinn, do you get a lot of nose bleeds?
Yeah,
Quinn (17:53):
my nose is, like, almost constantly oozing.
Just from, like, if I take ashower, if I'm working out and
during the winter it's bleedingthe whole time.
But most of the time it's just,it's not gushing, it's not
coming out, it's just dry bloodin my nose.
But in the winter, I'll starthaving some pretty bad
nosebleeds, but I mean, I canalways handle them, even though
(18:15):
they're super annoying and likepretty demoralizing, but I mean,
it's just something I gotta dealwith.
Taylor (18:22):
Well, all of you've talked about how you like, you,
you handle it yourselves.
Exactly how do you do that?
Do you carry certain things withyou?
Or, I mean, is there, do youhave a routine down as to
exactly what you do?
Louisa (18:36):
I have a nosebleed kit.
I bring it to school.
So I like take apart two tissueboxes and pull the tissues out
and put it all in a big plasticbag and then I have gloves and
like nose clamps.
So first of all, like I havebetter quality tissues at
school.
So even if I'm not having anosebleed, like it's good to
just have that.
(18:56):
But if it happens during school,usually I'll just like get the
tissue and sit there and hold itand just listen to the teacher
or whatever.
But if it's bad enough, thenI'll just go to the nurse.
Taylor (19:08):
What about you, Quinn?
What do you, what are, whattoolkit?
Quinn (19:12):
So I have like a med kit at my school that I, well, that
I take to college.
Yeah.
And it's just like a, it'sbasically a big tackle box.
It just has any sort of bleedingrelated like medical equipment
I'd need.
Huh.
And I'll usually take some bleedseeds, which is like fibers
twist them up and then justshove them up my nose as far as
(19:33):
I can.
And then I'll hold pressure onit.
And usually...
If it's a good day, it'll stopin one day.
Sometimes, it'll go on for acouple days.
But when I have it packed likethat, I don't really go out.
I just kind of stay in my roomand I don't really want to be
seen with a whole bunch of stuffup my nose.
Taylor (19:53):
Emily, I haven't had the pleasure of seeing somebody, or
really hearing a lot about howsomebody treats a throat bleed.
How do you manage
Julia (20:04):
those?
Emily (20:04):
They're just annoying because you're basically, like,
choking on your own blood.
So usually, like, nosebleedsI'll let go for a while, but
throat bleeds I'll start TXAright away.
Taylor (20:14):
I can imagine with throat bleeds you have to deal
with a lot of nausea.
Yeah
Emily (20:18):
usually it's kind of gross, but usually I just have,
like, a spit cup.
Louisa (20:23):
My nosebleeds, like, they've, I've never had a, well,
at least as far as I know, I'venever really had a nosebleed
that's lasted more than a day.
Like, the most has been, like,probably like, Eight hours
straight.
Okay.
So, I just, I don't know, I getit on my sheets sometimes, but I
have, like, extra padding underwhere I sleep, so it doesn't go
straight through the mattressand stuff.
But, I don't know, I'll get iton, like, my clothes, or, like,
(20:45):
a little bit on the floor, orthe bed, but, like, it's never,
I just, I always have it, mytissue on my nose, so, unless
it's, like, on full, like,it's...
It's not gonna be on the, like,all over the place.
Right.
Quinn (20:59):
Yeah.
If, if you take, like, all thesheets and pill cases off my
bed, it looks like something wasmurdered in it.
Emily (21:04):
Yeah, no one take a
Julia (21:05):
little black light in any
Emily (21:06):
of our rooms or bathrooms.
That's how me and I distinguishour pillows,
Julia (21:11):
because we're covered in blood and this isn't.
Taylor (21:13):
Now Julia You have a little bit more.
I think your your blood bag iskind of similar to what Quinn
was saying his his tackle boxeswe've always referred to it as
the blood bag, but what do youhave in your emergency blood
bag?
Julia (21:29):
I have Surgicil.
I used to carry Fibular, but nowI, like, use Surgicil more.
And I carry a few things inthere.
I have, like, a thing of Amicar,which I don't really take
anymore.
And then I have...
A small thing of epinephrine,because occasionally I can get a
hold of epinephrine.
If I don't have that on me, I'llhave Afrin.
And I'll have a little containerof q tips.
(21:52):
So that way I can soak theSurgicil, and with either the
Afrin or Epinephrine, put it upmy nose to where the spot I
believe it's bleeding, and thenI have a nose clamp as well, and
I'll put a nose clamp on and sitthere for like an hour or two,
hope it stops, if it doesn'tstop, maybe like put more in and
just sit there.
(22:12):
Sometimes it's like, it takesseveral days for a nosebleed to
stop but you know, you just tryto write it out, read a book, do
homework, watch TV, like,
Quinn (22:22):
sometimes it's like pulling a slug out of your nose,
Emily (22:25):
it's disgusting.
Louisa (22:26):
I, I like I have like two different types of
nosebleeds.
Like one where it's just kind ofcoming out, and then one where
like, like there are clots.
So usually when there's oneswith the clots, like if I don't
blow those clots out, mynosebleed won't stop.
So I get like a few tissues andblow it out into that tissue and
then throw that away.
(22:47):
And then just put it again andhope it stops before another big
clot forms.
Because I don't know, I've hadlike multiple different kinds of
nosebleeds and they're like,there's different ways to stop
each one and I just kind of haveto...
Hope that it's not the one withthe claws because that one's
just annoying to deal with.
Taylor (23:02):
I've
Julia (23:02):
had to do that too, like especially with like the
surgical packing like I've hadto take it out after putting it
in Like that day because I knowit's not hitting the spot that's
bleeding.
And so it's like it'sineffective I can't get the
packing to where it's bleedingSo I'm gonna take it out and try
to repack it and get to the spot
Taylor (23:18):
Louisa, you mentioned earlier that like sometimes you
think you're gonna get anosebleed so that made me super
curious.
Are there any warning signs fory'all?
Like have y'all noticed asyou've gotten older of any
warning signs?
Emily (23:33):
I
Louisa (23:33):
think a lot of people mention like when they have
nosebleeds like they don'tnotice but like I feel it before
it even comes out of my nose.
Like I'll wake up in the middleof the night like some people
sleep through their nosebleeds.
But like I'll wake up if I feellike I'm about to have one and
like my body just wakes me up SoI know before it's kind of
annoying like even if it's likea little small one It'll do that
(23:55):
and I'll wake up and then Ican't go back to sleep.
But I can tell especially likeat night I guess my body just
wakes me up and I'm like my nosefeels kind of weird I'm probably
about to have a nosebleed if Igo outside and it's super hot My
nose just kind of feels dry Andfeels like it's just like a good
place for a nosebleed to start.
Taylor (24:17):
It's hard
Quinn (24:17):
to like describe the feeling, but you kind of just
know when it's going to startbleeding.
Or like an approximate time,like it's probably going to
bleed in the next like fiveminutes or so.
And I don't, I usually wake upto it bleeding.
I don't wake up to the feelingthat it's about to bleed.
But when I wake up and it'sbleeding it's just...
(24:39):
Alright, I'll use my blanket orsomething to hold it wanna hear
about mouth bleeds, though.
Like, how you guys haveexperienced those throughout
childhood, teenage years.
Louisa (24:50):
I had to get, like, two teeth pulled or something.
And, like, we tried a bunch ofdifferent kinds of medicine, and
it just wasn't working.
So then we tried a frozenteabag, and that was finally
what it stopped, like, whatstopped it.
It's crazy, because, like, youcan buy that for, like, a
dollar.
And then you just put it in thefreezer and put it on the wound
in your mouth, and I don't knowwhy, some kind of chemical in it
(25:12):
or something, but it, it reallyhelped.
Quinn (25:14):
Have you guys gotten your wisdom teeth out or anything?
Yes.
How'd it go?
Was it like an inpatient orprocedure?
Mine
Emily (25:21):
was.
All four of mine were impacted.
And then I had the procedurescheduled, but then they got
scared and cancelled it.
And then one of mine rupturedand abscessed, so then it became
like an emergency situation.
Yeah, so, but it wasn't bad.
I was in the hospital for like,maybe two days.
My face was really swollen.
(25:41):
For how long after?
Maybe like three days.
It bruised, so like once theswelling went down, my face just
turned like yellow.
That like gross purple
Julia (25:49):
yellow.
It's like the greenish yellow.
Yeah.
Like it didn't turn like thepretty like purple blue.
No, just all green yellow.
I mean, mine was fine.
My other than, it was like a dayafter my stitches ruptured, and
so I had to go back and get thatfixed because I was bleeding
quite a bit.
But once he stitched it back upand he used I can't remember
what he used because I was likeunder anesthesia and stuff, but
(26:13):
he He was able to stitch it backup and it was fine and just, it
was just swelling that wasreally bad.
Quinn (26:18):
So I'm about to get mine out.
They're already like pokingthrough in the back, so I'm, I'm
a little, a little stressed outabout it.
I don't know what to expect.
I don't know how much it's goingto bleed, how different it's
going to be from like a normalperson getting their wisdom
teeth out, so.
Taylor (26:31):
Emily, did you use Novo beforehand?
I got Novo and Playlistbeforehand.
Okay, and you, I don't think,got either.
I've
Julia (26:39):
had, I didn't get anything beforehand.
I like took Amicar beforehandand then I had like a, like
blood on the ready in plateletsfor the ready in case anything
bad happened, which luckilynothing did, but they had stuff
to the side just in case, whichI, they never thought
Taylor (26:59):
anything bad was going to happen.
Well you had your wisdom teethtaken out?
No,
Louisa (27:04):
I have, like, I have, like, they're growing in kind of
weird.
So I might need that doneeventually, but we're trying to,
like, like, not do it if wedon't have to.
Postpone it if you, yeah.
Taylor (27:14):
Yeah?
Emily (27:16):
Do
Taylor (27:16):
you still have your wisdom teeth?
No, I had them taken out,
Quinn (27:19):
Before my sophomore
Emily (27:20):
year of college.
Do tell us more.
Quinn (27:23):
I had HLA match platelets beforehand, and everything went
really well.
I just had really bad black eyesafter.
That's what I remember.
And you really want to eat solidfoods for a while, and you
can't.
I'm a big fan of smoothies, so Ithink I'll be alright in that
aspect.
You can't
Emily (27:40):
use a straw though.
Use a spoon.
Quinn (27:44):
I'll have someone else do it to me.
Taylor (27:47):
Well guys I want to know what exactly you would like to
kind of see from the foundationin the future.
What you think that we could doas a foundation that could...
be helpful for not only justyour generation, but for those
younger ones who are starting tokind of go through a lot of the
(28:10):
same things that y'all wentthrough.
Louisa (28:12):
I think a really important thing, especially for
me, is representation so likenot even just like a famous
person or like someone in like abook or a movie, but just more
people knowing about it.
Like.
Even if it's not GTspecifically, probably
preferably GT and specificallysince it's so rare and most
people like know other bleedingdisorders But not GT.
(28:34):
I think Just as more people knowabout stuff like that in general
It's good because there's somany misconceptions and like
even with the awareness that'salready out there like people
are people don't understand
Taylor (28:48):
You mean you won't bleed out if you just get a paper cut?
Exactly.
Louisa (28:52):
It frustrates me to hear some of the stuff people think,
but I don't know.
It's not really their faultentirely because I don't know.
Like, there are plenty of otherrare disorders that people have
no idea about.
And like, it would be amazing ifeveryone could know every single
disorder, but it's notrealistic.
It's just good to, like, spread.
(29:13):
Knowledge to who can who canlearn.
Quinn (29:17):
Yeah.
Yeah.
I would like to see moreresearch and Like activity in
like underprivileged countries.
People who have GT in thosecountries, they don't have
access, they don't have like theprivilege we have to like have
this community, have these kindsof trips, have.
access to all the medicine, allthe health care that we need.
(29:38):
And, like, I assume there'sprobably quite a few GT patients
out there that aren't gettingthe care that they need.
And I think finding better waysto identify GT and treat people,
especially people who areunderprivileged, would be a good
idea.
thing to do.
Taylor (29:56):
Yeah.
I mean, in those underdevelopedcountries, the only treatment
really is platelet transfusions.
And as y'all know, the moreplatelet transfusions you have,
the more likely you are to getantibodies.
And then, you know, what do you,what do you do if you have a bad
bleed and you platelets don'twork?
So it's kind of like a crossyour fingers, pray and hope for
(30:17):
the best type of situation.
And it's 2023.
And the fact that that's stillSome people's reality is, is
pretty scary.
Emily (30:26):
I was gonna say representation too, but kind of
in a
Julia (30:29):
different direction.
Like, highlighting those in likethe older generation, our
generation, and the
Emily (30:35):
younger generation that kind of go out and do stuff.
I mean, you guys know it'salways been a huge thing for me
to...
Advocate for people doing whatthey want to do safely.
So, just representation of thosepeople that kind of do climb
over those hills and, and get todo things that people don't
think we typically can do aspeople with bleeding disorders
(30:56):
is, is something big.
And I think it's something thatreally
Julia (30:59):
helps parents and younger kids see that, It's definitely,
like, something that would benice to be seen more, like,
especially growing up.
And, like, I know I lived theway I lived, like, just did
whatever I want, and that's howyou did, too.
Kind of just ignored RGT.
But...
It's kind of
Emily (31:20):
the best way to go about it.
It's the best
Julia (31:22):
way to go about it, like, mentally, like, it's just like,
alright, I'm just gonna do myown thing.
Not gonna dwell on it.
But it'd be nice to see that.
More within the community andjust, like, people doing what
they want to do and, like, notliving in a bubble and it's just
like, look, you can do all thisother stuff.
Like, you Peter does, like, allthis weightlifting and, like,
(31:44):
has the tattoos and everything.
It's like, you're not going tobe confined, you're not
handicapped.
Like, you're going to be able todo more stuff than what the
doctors tell you.
Taylor (31:56):
So I do ask this at the end of every single podcast.
If you were to talk to youryounger self today, what would
you tell them about your GT andabout how Things are.
Well, what would you want themto know?
Quinn (32:15):
Anything I can say, someone probably has already
told me when I was younger.
Because, like, in Austin, andany of the other times I've met
with people with GT, they allkind of, it's not repetitive,
but it's kind of implying and...
Trying to get across the samepoint that, like, you just gotta
embrace it, and that's the onlyway you'll find peace with
(32:38):
having GT.
Yeah
Louisa (32:40):
I think, it gets easier when, as time passes, to deal
with this kind of thing, so,like, if you're struggling
really hard in the moment, like,you will definitely struggle
less.
in the future
Emily (32:54):
I wouldn't tell my younger self anything.
Even from childhood toadulthood, I lived my life
unapologetically andauthentically, and that's pretty
much how I would.
Do it all over again if I could.
Julia (33:07):
I mean, you only have one life, like, just keep living it,
and like, and you're gonnalearn, you're gonna make
mistakes, you're gonna learnfrom it, everyone deals with
their own stuff, and like,you're not the only one going
through everything, like,there's other people who have
other issues too, like, you'renot
Emily (33:20):
alone.
Taylor (33:22):
I want to wrap up this special episode with a thank you
to the officers of the GRF,Peter and Missy.
Without them, the conferencenever would have been a reality.
I also want to thank our amazingevent team at Corinthian Events
for helping us pull off a wildlysuccessful first conference and
our sponsors, Hemab Therapeuticsand Novo Nordisk.
And last, but certainly notleast, our GT community, support
(33:45):
we have on behalf of the entireboard.
We are honored and humbled byyour trust to provide an event
worthy of your support.
We will be back to our regularlyscheduled release dates of the
first Sunday of each month,starting in September.
In the meantime, you can checkout...
Pictures from our conference atwww.
curegt.
org.
(34:05):
And as always, if you have GTand you have not found us yet,
we do have a support group onFacebook.
Welcome back to Bruise Not Broken, life with Glansman's
thrombocenia.
For those of you who are new tous, Glansman's thrombocenia is
an extremely rare autosomalrecessive disorder of the blood,
in which platelets lackglycoprotein 2b3a.
Hence, no fibrinogen bridgingcan occur and bleeding time is
significantly prolonged.
GT can be life threatening andis estimated to affect 1 in 1
(00:22):
million.
This podcast is presented by theGlansman's Research Foundation
and myself, Taylor, and Peter.
This episode is a bit differentthan past episodes.
We recorded this episode sittingaround a table with one
microphone and five young adultsliving with GT.
They were gracious enough to sitdown with us after the first
full day of sessions at thisyear's GRF Educational
(00:43):
Conference.
Our guests that evening wereLouisa, Quinn, Julia, Emily, and
our very own Peter.
Without further ado, Our specialconference episode, Alright
guys, so we are at theconference.
We're in Boston.
(01:03):
It is Thursday night.
We had our first day of sessionsand tonight, today, whatever,
whenever we're posting this wehave Emily, who is a board
member.
We have Julia, who you've heardfrom before.
We also have Louisa and we haveQuinn.
Louisa, you are 16, right?
(01:24):
how old are you, Quinn?
You're 19 now?
Yeah, I'm 19.
Okay, perfect.
So you just had your first yearof college, Quinn tell us I
guess about your transition awayfrom home
Quinn (01:37):
It's been, it's been interesting.
Yeah.
I didn't really have very manyexpectations going into it, but
it was It was definitely superinteresting.
I went to a school that I loveat Ohio University.
And my parents went there.
It already felt like home.
I know the campus very well.
And I was kind of just excitedto have a fresh start.
(01:59):
Be around people, like newpeople I've never met before and
meet a lot of new friends and itwas super interesting going from
a small town into, I mean, asmall town but a college with
thousands of kids that I don'tknow and a lot of people knew of
my bleeding disorder in my smalltown and now I'm going somewhere
that basically no one knows andit's, it's pretty nice and I
(02:23):
don't have to tell people if Idon't want to and it just I
thought it was kind of scarygoing away from home.
It's about a three and a halfhour drive.
That's not too bad.
Taylor (02:34):
But it's, It's enough distance to where people don't
necessarily know who you are.
But it's not too far where ifthere's an emergency you can't
make it home, right?
Quinn (02:44):
Yeah, definitely, but I also didn't have a
Taylor (02:46):
car so.
Oh, no.
I was kind of
Quinn (02:49):
just stranded there, but it wasn't it wasn't bad I didn't
really have any Bad incidents oranything like that.
It was everything was wentpretty smoothly.
I had a lot of fun Met a lot ofnew people met some good
friends.
I'm still in contact with andI'm super excited to go back in
about a month
Taylor (03:09):
well I know Julia had kind of a similar experience
when she went off to college.
She was ready for people not toknow who
Emily (03:16):
she was.
Yeah, almost
Julia (03:17):
exact type of experience where it's like everyone knows,
like, oh, you're the kid withthe bleeding disorder, and then
you go to college and you'relike, oh, I can just be me.
Taylor (03:27):
And then Emily ran across the country.
Yeah.
So nobody knew who she wasreally at all.
Nope.
Nobody knew anything.
Did you find yourself kind of ina similar situation where it was
like, Ooh.
Okay, I don't have to tellpeople I have
Emily (03:43):
GT.
Julia (03:44):
Yeah, cause even with
Emily (03:45):
undergrad I was about an hour and a half away from home.
So, nobody
Julia (03:49):
really knew anything there either.
Yeah.
And then just moving across thecountry was even nicer.
Taylor (03:55):
Well Louisa, so what are you looking forward to?
Because you, I mean, you're not,you just moved kind of sort of
recently to Texas.
So you're starting off in like anew area too.
How was that for you?
Yeah,
Louisa (04:10):
It didn't really feel too different to me.
The only transition was likeafter I moved, these were some
of my first few years of publicschool.
So there's like a lot more kids.
I never really had any issues.
Like, I don't necessarily tellpeople I have anything.
Like, if someone, like, sees thebruises on my legs, they'll be
like, oh, what happened?
Just like, Oh, I have a bleedingdisorder.
Like, that's it.
(04:31):
And they don't really like bringit up.
If I have a nosebleed, like myteachers are okay with it.
We have like a meeting at thebeginning of the school year to
explain it.
I have school accommodations andI can basically just do
everything everyone else can do.
And I didn't really have anyissues with needing to feel like
I have to hide it, but I also, Idon't really talk about it that
(04:53):
much, but if I have an injury,like.
It usually makes sense toexplain to people why it's
probably worse than what they'veseen before.
But I'm a pretty, like,independent person, so I think
I'll be fine when I go tocollege.
Plus I'm planning on goingpretty far away.
I don't want to go, I don't wantto do school in state.
(05:15):
So I'm Where
Taylor (05:16):
are you going?
Louisa (05:16):
So I want to go to University of Washington.
Which is...
Okay.
It's pretty far, but also, like,my parents can visit.
Both my parents love Seattle.
Yeah.
And it's, I'm sure there'spretty good hospitals there.
It's not like I'd be completelyon my own.
But I'm, I'm, I
Taylor (05:36):
think I do fine.
Well, it's a bigger city too, soyou'll have an easier time kind
of finding a team and stuff tooin place as well.
Now, that's something that Iwanted to ask you, Quinn,
because you're in a smallcollege town.
So, are you, did you find a newteam when you went to that town?
Or are you staying with yoursame team that's three and a
(05:56):
half hours away?
Yeah,
Quinn (05:58):
so I stayed with the same team.
We do have a hospital.
In Athens, at OU, and it's, it'sabout a mile off campus, so
it's, it's not too bad, I can gothere if I really need an
infusion or some labs done, butto be honest, like OU isn't very
good with kids withdisabilities, they won't they
won't give me my medicine, theywon't, they won't really have
(06:19):
anything to do with me, so, ifI, if I want to Or if I have to,
I'll just go to the hospitaloutside.
It's not too bad, but I'mstaying with my crew and in
Cleveland, and they're reallygood.
They have other GT patients.
They know what they're doing,and I'm just really happy with
them.
Taylor (06:38):
Yeah.
No, you had to find a whole newteam when you went out to
California.
I did.
And that was your first timedoing that.
Yeah,
Emily (06:46):
and it was my first time kind of doing all of my own
medical stuff, like alone.
I mean, thankfully, there's a GTfamily that lives 15 minutes
from me who has been like mybackbone of support out there so
they hooked me up with, like,their hemophilia treatment
center.
Yeah.
So that transition was kind ofeasy for me because they kind
(07:11):
of, like, Took me under theirwing and put me into the...
Taylor (07:15):
I'm in my 30s and I still have a hard time, like,
tracking down specialists that Ineed or even picking up the
phone and making thoseappointments.
So to do that in your early 20swith something that you...
You know, have to absolutely do.
It's a little bit intimidating.
I can only imagine.
Peter still struggles as wellwith
Emily (07:39):
that.
So none of y'all feel like, you
Taylor (07:42):
know, it's not something that, Other people don't feel
because in well into your 30s,you're still going to kind of
get that anxiety picking up thephone and trying to track down
the doctor and especially tryingto find like the right one to
Quinn (07:56):
that's something that scares me like transitioning out
of college, trying to find a newspecialist somewhere.
I'm probably going to be workingout of state.
I have to find a new hospitalthat knows my needs and I have
to figure out insurance toobecause My saint of a mother has
been doing all that stuff forme.
Yeah, so it's gonna be it'sgonna be pretty tricky.
(08:18):
I think move out
Taylor (08:20):
Julia's got that coming up soon, too.
And like I said like it I'm inmy 30s I have two kids like I
don't know anything aboutpicking insurance.
So I can't even imagine what youknow, the anxiety that goes into
that especially finding one thatcovers your medications and
(08:41):
stuff like that because Novo 7is not cheap and, you know,
there's some stuff that is usedoff label as we learned today
and getting insurance companiesto pay for that type of stuff is
kind of scary.
Well guys the majority of y'allhave all been in the same room
before at past events, right?
(09:02):
So what was the, when was thelast time that you all saw each
other in person?
Austin?
How many years ago was that?
Well, okay, so here we are fiveyears later.
What do you, what do you think?
I mean, y'all are all five yearsolder.
Louisa (09:16):
No, I actually like...
I understand more of whatthey're talking about.
I don't get bored of it aseasily.
Because I feel like if I waslittle, like, I would just sit
there and not really understand.
I'd just be like, oh, whatever.
But, but now I can actuallyparticipate in the
conversations, especially sinceI've had more experience with
bleeds, especially in the pastfew years.
(09:36):
So, now I know a lot more than Idid before.
So, it's a better opportunity.
Yeah.
Quinn (09:43):
Yeah, I think, same thing as Louisa.
I, I think I like, soak in morenow that I'm older, now that I
can comprehend what they'reactually saying.
Mm hmm.
And I also feel that, like, I'mmore comfortable with GT now
than I was five years ago.
Like, I would struggle mentally,and I, it was a big identity
(10:03):
thing for me, and it was hard toidentify as, like, having a
bleeding disorder.
Mm hmm.
But now I feel more comfortablewith it, and it's kind of just
my normal now.
Taylor (10:15):
What do you think changed?
Like what do you, just growingup in general and maturing or
just,
Quinn (10:21):
Hey, I think it's maturing in time.
Time heals all.
And like, I was like when I waslittle, I was super torn up
about having a bleedingdisorder, being different and
not fitting in with the otherkids.
Now that, like, time has passed,like, I really don't care.
I don't care about fitting in.
I'm completely happy with who Iam and I wouldn't change it for
(10:42):
anything.
Taylor (10:42):
That's awesome.
So, no pressure or anything onany of y'all's shoulders, but
you do realize that, like,you're, like, the next
generation of GT.
After you, there's just likeyoung, young kids and then
before that I think there's, Imean, Peter, Adana, and then
everybody else is much older.
So, y'all are kind of the futureof Klansmans and really helping
(11:08):
other kids who are much youngerthan you.
How do you, how do you feelabout that?
Because this is such a raredisorder and there aren't very
many.
You know, people that these kidscan talk to, and I know that you
know, Emily's always been greatabout talking to other people
and stuff, but you two Quinn andLouisa, recently y'all have kind
(11:32):
of really stepped up, and that'sa lot to kind of take on.
Louisa (11:37):
Well I was, I always get people like, telling me like,
after like they know I have adisorder, they're like, Oh,
maybe you should be a doctor orsomething.
Like, I don't know.
First of all, I'm alreadydealing with whatever I have.
But also, I prefer to helppeople in other ways.
So, through this, like, I'm ableto do that because I already
know what it's like and I knowwhat's helped me in the past.
(12:00):
And I like being able to likegive people advice.
Like, even people without GT,like, they have a nosebleed.
Like, I know what to do to helpthem.
Like, if they can't get it tostop.
And it's, it's like, it's verysatisfying.
Like, when you're able to likehelp people like that.
Even if it's not in like adirect way, like being a doctor.
Taylor (12:16):
Yeah.
Well, I'm sure you're both verycalm in a crisis.
Which, which is a really goodquality to have.
Because, I mean, living with GT.
Your entire childhood is almosta crisis.
So now since y'all are like thenext generation and kind of like
the younger, the younger onesand stuff, you really have the
(12:39):
best insight as to what youthink could help the future
generations.
What is something that you Wasavailable to you just within the
GT community at that time?
I
Louisa (12:54):
Know like Like I have I don't have to get my blood drawn
very often But if I had known,like, earlier, like, better
tactics to help with that, like,I used to do numbing cream,
didn't really work that well forme, now I do cold spray, and I,
I've learned that, I know thatit's a difficult thing for a lot
(13:16):
of people to have to constantlybe poked, but it hurts less when
you're calmer about it, and Iknow that it's hard to be calm
sometimes, but as you As youcontinuously do this, like, you
will, you will start to becomemore comfortable with it,
Quinn (13:35):
I think, I, I wish somebody told me that, like,
it's okay to be different, andnot fit in with other people,
and it's probably better to notfit in with other people
because, You don't want to belike everyone else.
Taylor (13:47):
Average is boring.
And you always have a reallygreat story to tell.
Quinn (13:52):
I think comedic relief is the best coping method.
Taylor (13:56):
Yeah, okay, so.
I know I'm used to it andeverybody else in this room is
pretty much used to it becausewe're around y'all, but When you
make a self deprecating jokeabout your bleeding disorder in
front of other people who don'tknow you all that well What
Emily (14:14):
is typically the response?
Julia (14:17):
They go like, wow, that was dark.
Taylor (14:20):
I'm like,
Emily (14:21):
sorry.
Taylor (14:23):
Well guys, so do you, now speaking of physical
activity, but does anybody elseat this table, do you take into
account like when you.
When you're out doing somethingor whatever, like does any, does
GT stop you from doing anythingin
Louisa (14:40):
particular?
I think sometimes, like I wentto Greece last summer and I got
bruises on my legs and petechiajust from walking.
Cause it was like all day.
And I was, it was kind ofpainful, but I was fine.
I just like, I try to do what Iwant to do just kind of with
accommodation.
(15:00):
I'm trying color guard this yearwhich, cause I need to get a P.
E.
credit.
So I think the only issue Imight have with it is the heat.
But my iron levels and myhemoglobin are good right now,
so I should be decently okay ifI drink water.
And like bruising my hands, butI'm pretty sure I'll be allowed
to wear gloves.
Taylor (15:21):
What about you, Quinn?
Jumping out of any planes soon?
That's actually
Quinn (15:25):
on my bucket list.
I do it as
Emily (15:27):
fast as
Taylor (15:28):
I can.
Isn't it on yours?
Yeah, it's on Peter's too.
I tend to be pretty
Quinn (15:31):
impulsive and like, just do what I want whenever I want.
Taylor (15:34):
No one at this table understands that.
At all.
Quinn (15:38):
But at the same time, I do think of GT a lot.
Like for example, my friends incollege, they would always have
boxing matches just in ourdorms.
And they would always be like,Quinn, like it's your turn, you
gotta do it.
And I'm like, I think I'll sitout.
But sometimes I'm like bummed,I'm like, I kinda wanna box.
But, but, thinking back on it,I'm like, So glad I did not join
(16:02):
in on the boxing match.
Taylor (16:03):
Do y'all feel like you are prepared for handling this
as adults one day by yourselves?
Yeah, I
Louisa (16:11):
think so.
It's like, especially for me,since I haven't had any issues
for quite a while now the onlything I'll get is like
nosebleeds, but I just like hopefor the best that I don't have
to deal with anything else Ican, I don't know, I, I don't
really want to learn how to selfinfuse I feel like that would be
difficult for me, but I don'tneed Nova 7 that often anyway,
(16:34):
so, I don't know.
I usually just need it like inthe hospital, so like I don't
have to be the one to do that.
Right.
So, I, I just need to learn howto deal with everything else,
which I've basically alreadydone, so.
Taylor (16:46):
I know Julia gets nosebleeds.
Emily, you don't typically get alot of nosebleeds, do you?
I
Emily (16:53):
get nosebleeds on occasion.
Mostly I think it has to do withthe
California
Julia (16:57):
heat.
But throatbleeds
Taylor (16:59):
are my...
I was about to say, that's,that's your forte.
Yeah.
Louisa, what, are you dealingwith more nosebleeds or are you
dealing with more like throat,throatbleeds?
I had a, I
Louisa (17:10):
had a throatbleed like once.
Like I used to cut the inside ofmy throat.
Mm hmm.
It's awful to deal with, but Ideal with more nosebleeds now,
especially like that's probablythe only thing I have to deal
with, aside from like bruising,but it usually happens at night.
So I'll just get a tissue andthen like the nose clamp and
then put it on and just go backto sleep and hope it's stopped
(17:33):
in the morning but sometimeswhen I'm outside and it's really
hot, I feel like I'm going toget one, but most of the time I
don't.
So, I just it seems random forme, so I just kind of hope I
don't get one when I go outside.
But I know how to deal with itif I do get one, so.
Taylor (17:51):
Now, Quinn, do you get a lot of nose bleeds?
Yeah,
Quinn (17:53):
my nose is, like, almost constantly oozing.
Just from, like, if I take ashower, if I'm working out and
during the winter it's bleedingthe whole time.
But most of the time it's just,it's not gushing, it's not
coming out, it's just dry bloodin my nose.
But in the winter, I'll starthaving some pretty bad
nosebleeds, but I mean, I canalways handle them, even though
(18:15):
they're super annoying and likepretty demoralizing, but I mean,
it's just something I gotta dealwith.
Taylor (18:22):
Well, all of you've talked about how you like, you,
you handle it yourselves.
Exactly how do you do that?
Do you carry certain things withyou?
Or, I mean, is there, do youhave a routine down as to
exactly what you do?
Louisa (18:36):
I have a nosebleed kit.
I bring it to school.
So I like take apart two tissueboxes and pull the tissues out
and put it all in a big plasticbag and then I have gloves and
like nose clamps.
So first of all, like I havebetter quality tissues at
school.
So even if I'm not having anosebleed, like it's good to
just have that.
(18:56):
But if it happens during school,usually I'll just like get the
tissue and sit there and hold itand just listen to the teacher
or whatever.
But if it's bad enough, thenI'll just go to the nurse.
Taylor (19:08):
What about you, Quinn?
What do you, what are, whattoolkit?
Quinn (19:12):
So I have like a med kit at my school that I, well, that
I take to college.
Yeah.
And it's just like a, it'sbasically a big tackle box.
It just has any sort of bleedingrelated like medical equipment
I'd need.
Huh.
And I'll usually take some bleedseeds, which is like fibers
twist them up and then justshove them up my nose as far as
(19:33):
I can.
And then I'll hold pressure onit.
And usually...
If it's a good day, it'll stopin one day.
Sometimes, it'll go on for acouple days.
But when I have it packed likethat, I don't really go out.
I just kind of stay in my roomand I don't really want to be
seen with a whole bunch of stuffup my nose.
Taylor (19:53):
Emily, I haven't had the pleasure of seeing somebody, or
really hearing a lot about howsomebody treats a throat bleed.
How do you manage
Julia (20:04):
those?
Emily (20:04):
They're just annoying because you're basically, like,
choking on your own blood.
So usually, like, nosebleedsI'll let go for a while, but
throat bleeds I'll start TXAright away.
Taylor (20:14):
I can imagine with throat bleeds you have to deal
with a lot of nausea.
Yeah
Emily (20:18):
usually it's kind of gross, but usually I just have,
like, a spit cup.
Louisa (20:23):
My nosebleeds, like, they've, I've never had a, well,
at least as far as I know, I'venever really had a nosebleed
that's lasted more than a day.
Like, the most has been, like,probably like, Eight hours
straight.
Okay.
So, I just, I don't know, I getit on my sheets sometimes, but I
have, like, extra padding underwhere I sleep, so it doesn't go
straight through the mattressand stuff.
But, I don't know, I'll get iton, like, my clothes, or, like,
(20:45):
a little bit on the floor, orthe bed, but, like, it's never,
I just, I always have it, mytissue on my nose, so, unless
it's, like, on full, like,it's...
It's not gonna be on the, like,all over the place.
Right.
Quinn (20:59):
Yeah.
If, if you take, like, all thesheets and pill cases off my
bed, it looks like something wasmurdered in it.
Emily (21:04):
Yeah, no one take a
Julia (21:05):
little black light in any
Emily (21:06):
of our rooms or bathrooms.
That's how me and I distinguishour pillows,
Julia (21:11):
because we're covered in blood and this isn't.
Taylor (21:13):
Now Julia You have a little bit more.
I think your your blood bag iskind of similar to what Quinn
was saying his his tackle boxeswe've always referred to it as
the blood bag, but what do youhave in your emergency blood
bag?
Julia (21:29):
I have Surgicil.
I used to carry Fibular, but nowI, like, use Surgicil more.
And I carry a few things inthere.
I have, like, a thing of Amicar,which I don't really take
anymore.
And then I have...
A small thing of epinephrine,because occasionally I can get a
hold of epinephrine.
If I don't have that on me, I'llhave Afrin.
And I'll have a little containerof q tips.
(21:52):
So that way I can soak theSurgicil, and with either the
Afrin or Epinephrine, put it upmy nose to where the spot I
believe it's bleeding, and thenI have a nose clamp as well, and
I'll put a nose clamp on and sitthere for like an hour or two,
hope it stops, if it doesn'tstop, maybe like put more in and
just sit there.
(22:12):
Sometimes it's like, it takesseveral days for a nosebleed to
stop but you know, you just tryto write it out, read a book, do
homework, watch TV, like,
Quinn (22:22):
sometimes it's like pulling a slug out of your nose,
Emily (22:25):
it's disgusting.
Louisa (22:26):
I, I like I have like two different types of
nosebleeds.
Like one where it's just kind ofcoming out, and then one where
like, like there are clots.
So usually when there's oneswith the clots, like if I don't
blow those clots out, mynosebleed won't stop.
So I get like a few tissues andblow it out into that tissue and
then throw that away.
(22:47):
And then just put it again andhope it stops before another big
clot forms.
Because I don't know, I've hadlike multiple different kinds of
nosebleeds and they're like,there's different ways to stop
each one and I just kind of haveto...
Hope that it's not the one withthe claws because that one's
just annoying to deal with.
Taylor (23:02):
I've
Julia (23:02):
had to do that too, like especially with like the
surgical packing like I've hadto take it out after putting it
in Like that day because I knowit's not hitting the spot that's
bleeding.
And so it's like it'sineffective I can't get the
packing to where it's bleedingSo I'm gonna take it out and try
to repack it and get to the spot
Taylor (23:18):
Louisa, you mentioned earlier that like sometimes you
think you're gonna get anosebleed so that made me super
curious.
Are there any warning signs fory'all?
Like have y'all noticed asyou've gotten older of any
warning signs?
Emily (23:33):
I
Louisa (23:33):
think a lot of people mention like when they have
nosebleeds like they don'tnotice but like I feel it before
it even comes out of my nose.
Like I'll wake up in the middleof the night like some people
sleep through their nosebleeds.
But like I'll wake up if I feellike I'm about to have one and
like my body just wakes me up SoI know before it's kind of
annoying like even if it's likea little small one It'll do that
(23:55):
and I'll wake up and then Ican't go back to sleep.
But I can tell especially likeat night I guess my body just
wakes me up and I'm like my nosefeels kind of weird I'm probably
about to have a nosebleed if Igo outside and it's super hot My
nose just kind of feels dry Andfeels like it's just like a good
place for a nosebleed to start.
Taylor (24:17):
It's hard
Quinn (24:17):
to like describe the feeling, but you kind of just
know when it's going to startbleeding.
Or like an approximate time,like it's probably going to
bleed in the next like fiveminutes or so.
And I don't, I usually wake upto it bleeding.
I don't wake up to the feelingthat it's about to bleed.
But when I wake up and it'sbleeding it's just...
(24:39):
Alright, I'll use my blanket orsomething to hold it wanna hear
about mouth bleeds, though.
Like, how you guys haveexperienced those throughout
childhood, teenage years.
Louisa (24:50):
I had to get, like, two teeth pulled or something.
And, like, we tried a bunch ofdifferent kinds of medicine, and
it just wasn't working.
So then we tried a frozenteabag, and that was finally
what it stopped, like, whatstopped it.
It's crazy, because, like, youcan buy that for, like, a
dollar.
And then you just put it in thefreezer and put it on the wound
in your mouth, and I don't knowwhy, some kind of chemical in it
(25:12):
or something, but it, it reallyhelped.
Quinn (25:14):
Have you guys gotten your wisdom teeth out or anything?
Yes.
How'd it go?
Was it like an inpatient orprocedure?
Mine
Emily (25:21):
was.
All four of mine were impacted.
And then I had the procedurescheduled, but then they got
scared and cancelled it.
And then one of mine rupturedand abscessed, so then it became
like an emergency situation.
Yeah, so, but it wasn't bad.
I was in the hospital for like,maybe two days.
My face was really swollen.
(25:41):
For how long after?
Maybe like three days.
It bruised, so like once theswelling went down, my face just
turned like yellow.
That like gross purple
Julia (25:49):
yellow.
It's like the greenish yellow.
Yeah.
Like it didn't turn like thepretty like purple blue.
No, just all green yellow.
I mean, mine was fine.
My other than, it was like a dayafter my stitches ruptured, and
so I had to go back and get thatfixed because I was bleeding
quite a bit.
But once he stitched it back upand he used I can't remember
what he used because I was likeunder anesthesia and stuff, but
(26:13):
he He was able to stitch it backup and it was fine and just, it
was just swelling that wasreally bad.
Quinn (26:18):
So I'm about to get mine out.
They're already like pokingthrough in the back, so I'm, I'm
a little, a little stressed outabout it.
I don't know what to expect.
I don't know how much it's goingto bleed, how different it's
going to be from like a normalperson getting their wisdom
teeth out, so.
Taylor (26:31):
Emily, did you use Novo beforehand?
I got Novo and Playlistbeforehand.
Okay, and you, I don't think,got either.
I've
Julia (26:39):
had, I didn't get anything beforehand.
I like took Amicar beforehandand then I had like a, like
blood on the ready in plateletsfor the ready in case anything
bad happened, which luckilynothing did, but they had stuff
to the side just in case, whichI, they never thought
Taylor (26:59):
anything bad was going to happen.
Well you had your wisdom teethtaken out?
No,
Louisa (27:04):
I have, like, I have, like, they're growing in kind of
weird.
So I might need that doneeventually, but we're trying to,
like, like, not do it if wedon't have to.
Postpone it if you, yeah.
Taylor (27:14):
Yeah?
Emily (27:16):
Do
Taylor (27:16):
you still have your wisdom teeth?
No, I had them taken out,
Quinn (27:19):
Before my sophomore
Emily (27:20):
year of college.
Do tell us more.
Quinn (27:23):
I had HLA match platelets beforehand, and everything went
really well.
I just had really bad black eyesafter.
That's what I remember.
And you really want to eat solidfoods for a while, and you
can't.
I'm a big fan of smoothies, so Ithink I'll be alright in that
aspect.
You can't
Emily (27:40):
use a straw though.
Use a spoon.
Quinn (27:44):
I'll have someone else do it to me.
Taylor (27:47):
Well guys I want to know what exactly you would like to
kind of see from the foundationin the future.
What you think that we could doas a foundation that could...
be helpful for not only justyour generation, but for those
younger ones who are starting tokind of go through a lot of the
(28:10):
same things that y'all wentthrough.
Louisa (28:12):
I think a really important thing, especially for
me, is representation so likenot even just like a famous
person or like someone in like abook or a movie, but just more
people knowing about it.
Like.
Even if it's not GTspecifically, probably
preferably GT and specificallysince it's so rare and most
people like know other bleedingdisorders But not GT.
(28:34):
I think Just as more people knowabout stuff like that in general
It's good because there's somany misconceptions and like
even with the awareness that'salready out there like people
are people don't understand
Taylor (28:48):
You mean you won't bleed out if you just get a paper cut?
Exactly.
Louisa (28:52):
It frustrates me to hear some of the stuff people think,
but I don't know.
It's not really their faultentirely because I don't know.
Like, there are plenty of otherrare disorders that people have
no idea about.
And like, it would be amazing ifeveryone could know every single
disorder, but it's notrealistic.
It's just good to, like, spread.
(29:13):
Knowledge to who can who canlearn.
Quinn (29:17):
Yeah.
Yeah.
I would like to see moreresearch and Like activity in
like underprivileged countries.
People who have GT in thosecountries, they don't have
access, they don't have like theprivilege we have to like have
this community, have these kindsof trips, have.
access to all the medicine, allthe health care that we need.
(29:38):
And, like, I assume there'sprobably quite a few GT patients
out there that aren't gettingthe care that they need.
And I think finding better waysto identify GT and treat people,
especially people who areunderprivileged, would be a good
idea.
thing to do.
Taylor (29:56):
Yeah.
I mean, in those underdevelopedcountries, the only treatment
really is platelet transfusions.
And as y'all know, the moreplatelet transfusions you have,
the more likely you are to getantibodies.
And then, you know, what do you,what do you do if you have a bad
bleed and you platelets don'twork?
So it's kind of like a crossyour fingers, pray and hope for
(30:17):
the best type of situation.
And it's 2023.
And the fact that that's stillSome people's reality is, is
pretty scary.
Emily (30:26):
I was gonna say representation too, but kind of
in a
Julia (30:29):
different direction.
Like, highlighting those in likethe older generation, our
generation, and the
Emily (30:35):
younger generation that kind of go out and do stuff.
I mean, you guys know it'salways been a huge thing for me
to...
Advocate for people doing whatthey want to do safely.
So, just representation of thosepeople that kind of do climb
over those hills and, and get todo things that people don't
think we typically can do aspeople with bleeding disorders
(30:56):
is, is something big.
And I think it's something thatreally
Julia (30:59):
helps parents and younger kids see that, It's definitely,
like, something that would benice to be seen more, like,
especially growing up.
And, like, I know I lived theway I lived, like, just did
whatever I want, and that's howyou did, too.
Kind of just ignored RGT.
But...
It's kind of
Emily (31:20):
the best way to go about it.
It's the best
Julia (31:22):
way to go about it, like, mentally, like, it's just like,
alright, I'm just gonna do myown thing.
Not gonna dwell on it.
But it'd be nice to see that.
More within the community andjust, like, people doing what
they want to do and, like, notliving in a bubble and it's just
like, look, you can do all thisother stuff.
Like, you Peter does, like, allthis weightlifting and, like,
(31:44):
has the tattoos and everything.
It's like, you're not going tobe confined, you're not
handicapped.
Like, you're going to be able todo more stuff than what the
doctors tell you.
Taylor (31:56):
So I do ask this at the end of every single podcast.
If you were to talk to youryounger self today, what would
you tell them about your GT andabout how Things are.
Well, what would you want themto know?
Quinn (32:15):
Anything I can say, someone probably has already
told me when I was younger.
Because, like, in Austin, andany of the other times I've met
with people with GT, they allkind of, it's not repetitive,
but it's kind of implying and...
Trying to get across the samepoint that, like, you just gotta
embrace it, and that's the onlyway you'll find peace with
(32:38):
having GT.
Yeah
Louisa (32:40):
I think, it gets easier when, as time passes, to deal
with this kind of thing, so,like, if you're struggling
really hard in the moment, like,you will definitely struggle
less.
in the future
Emily (32:54):
I wouldn't tell my younger self anything.
Even from childhood toadulthood, I lived my life
unapologetically andauthentically, and that's pretty
much how I would.
Do it all over again if I could.
Julia (33:07):
I mean, you only have one life, like, just keep living it,
and like, and you're gonnalearn, you're gonna make
mistakes, you're gonna learnfrom it, everyone deals with
their own stuff, and like,you're not the only one going
through everything, like,there's other people who have
other issues too, like, you'renot
Emily (33:20):
alone.
Taylor (33:22):
I want to wrap up this special episode with a thank you
to the officers of the GRF,Peter and Missy.
Without them, the conferencenever would have been a reality.
I also want to thank our amazingevent team at Corinthian Events
for helping us pull off a wildlysuccessful first conference and
our sponsors, Hemab Therapeuticsand Novo Nordisk.
And last, but certainly notleast, our GT community, support
(33:45):
we have on behalf of the entireboard.
We are honored and humbled byyour trust to provide an event
worthy of your support.
We will be back to our regularlyscheduled release dates of the
first Sunday of each month,starting in September.
In the meantime, you can checkout...
Pictures from our conference atwww.
curegt.
org.
(34:05):
And as always, if you have GTand you have not found us yet,
we do have a support group onFacebook.
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