January 1, 2023 • 36 mins
In this episode, we turn inward and speak with our very own Peter Zdziarski and Julia Smith. They allow us to take a glimpse into their lives growing up with Glanzmann Thrombasthenia by sharing their highs and lows throughout the years. These two jump outside of their comfort zones to encourage more people within the GT community to share their stories.
If you want to share your story, you can do so in our website's Faces of GT section.
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Episode Transcript
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Taylor Anne Burtz (00:00):
Welcome back to Bruised Not Broken
(00:03):
Glanzmann's Thrombasthenia.
This month's guests are twopeople who actually have
Glanzmann's Thrombasthenia, andwho are not ever really
comfortable talking aboutthemselves, but they're very,
very involved in the foundationand I was able to persuade them.
(00:23):
We have our very own PeterZdziarski and Julia Smith.
Those names should soundfamiliar.
Peter is our Producer as well asthe Vice President of the
foundation, and Julia is aCo-Founder and no pressure on
her or anything, but kind of thewhole reason the foundation was
started.
(00:44):
Now the majority of our supportgroup do know these two, but we
do have quite a few new peopleas well.
Julia is actually my littlesister and Julia and I's mom
founded the Glanzmann's ResearchFoundation in 2001.
Julia quickly became the face ofthe GRF and in the name of GT
(01:05):
sacrificed pretty much all ofher personal privacy growing up.
Understandably as Julia gotolder, she craved that privacy.
And when she went off tocollege, she kind of took a step
back out of the limelight and.
The death of our mom kind ofadded onto that timeline and now
she is wanting to tell her storyin her own words.
(01:27):
Peter was approached by my mom acouple of years before she
passed and he has been helpingwith the Facebook support group
and that aspect.
And then when she passed awayJulia and I actually made the
decision to approach Peter aboutbeing our partner in taking over
the foundation.
Mom and Peter's mom, Missy hadbeen very close for more than a
(01:50):
decade.
Peter and I first met when I was17, so that was 2007.
And even though I'd always knownhim throughout, you know,
stories and everything thesepast three years, honestly,
we've grown quite close.
I think of him as a brother ofsorts which is why this is gonna
be even more fun cause I'm notgonna hold back And I will say
(02:12):
that the foundation would not bewhere it is today without Peter.
He has been very paramount inour success, so I'm very proud
of both of them for agreeing todo this.
This takes a lot of courage.
And it's a step out of theircomfort zone.
And I, first I wanna say thankyou to both of you for doing
this.
Peter Zdziarski (02:31):
No problem.
Julia Smith (02:34):
Of course.
Taylor Anne Burtz (02:36):
Julia everyone knows what Peter's been
up to for these past couple ofyears, but I'm sure they're
curious as to what you've beenup to.
Last we heard really from likean update was that you had gone
off to college and I think somepeople were aware that you went
and studied abroad.
Can you tell us a little bitabout that?
Julia Smith (02:57):
I went to my second semester of sophomore year, I
had the opportunity to travel toTrujillo, Spain and live with a
host family for about three anda half months.
That was really interesting newexperience because it was a city
of 3000 people and nobody therespoke English it was great.
Taylor Anne Burtz (03:19):
I'm sure that was a fun experience and now
you're pretty fluent in Spanishand you had to walk everywhere
there, didn't you?
Julia Smith (03:27):
Yes.
definitely had to walkeverywhere.
Taylor Anne Burtz (03:29):
How was that?
Julia Smith (03:31):
I mean, it was fine.
I feel younger, that would'vebeen more of an issue, but now I
guess I'm stronger, it was finewalking everywhere.
No bleeds in my joints oranything.
Taylor Anne Burtz (03:40):
Well so when you got back is kind of, when
everything happened, you and momhad done a trip to Italy at the
very, very end of your studyabroad.
And then within a couple ofmonths of mom passing away,
COVID hit.
What exactly happened when COVIDhit?
Julia Smith (03:55):
Well, everything was kind of put on pause and
kind of took a break from schooland now I'm back
Taylor Anne Burtz (04:02):
What are you currently studying?
Julia Smith (04:03):
I'm art history major and my minor in Spanish of
course.
Taylor Anne Burtz (04:07):
I do wanna say that when she went off to
Spain and everything I don'tknow.
We kind of all were everybody inthe family was a little bit
hesitant and you were like, Ireally don't care.
I'm going.
You had kind of a backup planand everything and you didn't
let that stop you, which haskind of been the theme of your
life.
And I think that's been a themeof Peter's life too, is you're
not really gonna let yourdisorder stop you from going out
(04:30):
and doing the things that youreally wanna do.
One of the main reasons westarted this podcast was not
only to shine a light on GT as adisorder, but we also wanted to
shine a light on the experiencesof those with Glanzmann's.
This is probably hard because Ihave a hard time remembering my
own childhood, like early early,but, what is your first GT
(04:52):
memory?
When did you first realize thatyou had something that other
people didn't?
Peter Zdziarski (04:57):
That's kind of a hard question.
I think, my first bleed was likea GI bleed where it just started
out of nowhere and I had no ideawhere it came from.
But I don't know if I reallyknew I was different.
I actually had my first goodexperience in a hospital from
that.
I remember all the good parts,not the bad parts.
Taylor Anne Burtz (05:16):
That's good to hear though that the bad
parts didn't stick out in yourmemory.
Julia, do you have kind of asimilar experience?
Julia Smith (05:24):
Yeah.
I just thought it was prettynormal growing up and then just
explaining people like, oh, Ilike.
bleed sometimes just someclassmates would have peanut
allergies or something likethat.
I didn't think it was anythingodd.
Taylor Anne Burtz (05:35):
Yeah, it was your normal, so you didn't
necessarily realize anything wasdifferent.
So you each have siblings, butyou have vastly different
perspectives.
Julia, you're the baby of thefamily, and Peter, you're the
oldest.
Was there ever a moment when youfelt alienated?
Peter Zdziarski (05:53):
I'd say for me it was around middle school.
I feel like for most peoplemiddle school is like, where the
wake up calls kind of come inand you're like oh, oh, I'm
different
Taylor Anne Burtz (06:04):
middle school's rough.
Not only do you have to dealwith like the normal hormones
of, you know, kids figuring outmoodiness and everything, but
that's when.
A lot of bullying happens too,Julia.
Did you ever feel alienated?
Julia Smith (06:19):
Well, yeah.
From a young age.
Cause I would always go to thehospital with mom I guess you
and Milledge never reallyunderstood that.
It wasn't spending special timewith mom.
I feel like y'all thought of itlike that when it, that wasn't
what it was.
It was me having to deal withbleeds and everything.
I would feel alienated fromy'all because y'all would have
(06:39):
to kind of rely on each otherand have each other's back.
Which it's nothing hold againstyou or anything.
It's just how it was.
And then middle school growingup.
Not being able to participate involleyball and basketball and
stuff like that, other things myfriends were doing.
Taylor Anne Burtz (06:57):
Did you ever feel Peter, or did your, did you
and your siblings ever kind oflike fight about your mom
spending more time with you orhave they ever said anything to
you about
Peter Zdziarski (07:07):
No, I, I was actually gonna ask you how you
actually felt about it, sinceyou're here.
Taylor Anne Burtz (07:13):
Yeah.
Just to kind of let everybodyknow, there is an eight year age
difference between Julia and Iand a seven year age difference
between my brother and I.
So when Julia was born, I was,eight years old.
And I do remember it was my dadwas in his residency so he was
working all the time.
(07:33):
He kind of did, he picked up abunch of extra shifts and stuff
too to kind of help pay offstudent loans.
And so mom kind of leaned on meto help with millage.
I do think that, I mean, she'scompletely right in the view of
it seemed like Milage and I wereour own components separate from
her.
And it was a lot of the, becauseI had to kind of be there for
(07:55):
him when she was gone and try tomake things as normal as
possible.
And so there was some fightingbetween Milage and Julia
definitely when it came tomiddle school age.
Because he felt like, thingsweren't fair that she always got
what she wanted or, you know wealways have to do what Julia
wants and everything.
As we've gotten older and kindof looked back on it and really
(08:18):
kind of realized the wholeentire situation and also had
Julia speak up about a lot ofthings, it kind of turned and
it, the three of us became onebig component once they were in
high school really.
But there was a time there whereit did feel like it was kind of
(08:38):
Julia and Mom, and then me andMilledge.
Julia Smith (08:40):
Yes, definitely.
Taylor Anne Burtz (08:42):
Alright, so we did touch on middle school a
little bit.
Peter, you went to publicschool, right?
Julia went to private school.
So you both actually, again,have different perspectives on
this.
What was school like for you?
You know, growing up friends,tell me about that experience.
Peter Zdziarski (09:01):
When GT became very aware to me, it was not
fun.
Yeah.
I think being a guy, all theguys are signing up for football
and baseball and stuff, and youwant to do that too, and then
you can't, and then they ask youwhy can't you?
So that's when I kind of startedto stick out mm-hmm.
and at least when GT became veryapparent to me.
(09:22):
And then I mean, sometimes ingym class, but honestly I kind
of had deals with my gymteachers.
We were like, listen, that formthat you got,
Taylor Anne Burtz (09:31):
she's not gonna tell anybody that I
participated today.
Peter Zdziarski (09:35):
Yeah.
Like, let, let me do dodge ball.
I'll do volleyball.
I might not be able to play thenext day, but I'm gonna play.
Taylor Anne Burtz (09:42):
I think Julia's kicking herself for not
having that idea.
Well so Peter, was your school alarge school or was it a smaller
school?
Peter Zdziarski (09:51):
Oh, it was so small and that probably, that
probably helped with me beingable to ask.
Taylor Anne Burtz (09:56):
I was about to say cuz you were basically
were with the same kids fromelementary school on.
Peter Zdziarski (10:01):
Yeah.
And I probably being in a smallschool, one thing that really
annoyed me too was a teacher,asked two of my friends to look
out for me once and then theytold me that she said that and I
was not happy with that.
Taylor Anne Burtz (10:16):
Julia as the youngest child with two siblings
that went to the same exactschool as you at a very small
school.
Yeah.
How was your experience growingup?
Julia Smith (10:28):
It was good in the fact that everyone I went to
school with, they're likepractically family.
I had a graduating class of 50people.
Growing up, knowing them fromthat age on, it was, they knew
about me.
They knew to keep an out for me.
They, they knew y'all too, theyhad older siblings as well.
(10:50):
And so it's just I grew up witheveryone knowing so everyone was
pretty much just used to it.
But I would get left out for PEand stuff like that.
Not the best time.
I think it was middle schoolthat I finally decided, Hey,
it's not productive for me tojust be sitting on the sidelines
the whole time and watchingeveryone else do fun stuff that
I can't participate in.
(11:11):
And so I was like, I'll come forthe days that I can participate
and the rest of the time let mehave a study hall.
Taylor Anne Burtz (11:18):
Do you remember this Julia any time
that you transitioned fromelementary school up to middle
school or middle school up tohigh school?
Do you remember mom having ameeting with all the teachers
and your entire class?
Julia Smith (11:30):
Yes.
Okay.
Very much.
Taylor Anne Burtz (11:32):
Her heart was in the right place.
Definitely.
Her whole thing was raisingawareness, to her, the whole
school should know.
And so I do remember her kind ofsitting down with Julia's class
and explaining to them whatGlanzmann's was in middle
school.
And then I remember her talkingto a lot of the teachers too.
(11:52):
But Julia also had a lot ofteachers that I had.
And because it was such a smallcommunity, all of these teachers
knew when I came through thatJulia had GT because every
single science class that I wasin when we got to the genetics
portion.
I would use my family as anexample because of GT and it
(12:15):
being an autosomal recessivedisorder.
It was very well known withinour small community.
Julia Smith (12:21):
I didn't realize how fortunate that was until I
got to college.
I think I was two weeks in, inone of my classes and walking
into class and I go collegeCharleston.
I was wearing like jean shortsor something walking into class
by bare legs.
Which is normal in Augusta.
I walk around, no one saysanything, walking into class,
(12:41):
this girl behind me just gaspand she's like, oh my God,
what's on your leg?
And I'm looking down, thinkingthere's a bug or something in my
leg.
What is wrong?
And they're you have a hugebruise on your thigh.
And it's just then I having toexplain to my class and I'm
like, I'm fine.
Nothing's wrong with me.
Nothing's happening at home.
Just having to explain to themthat I have GT it is just, that
(13:04):
was like my first like, oh yeah,people dunno this, it's not
normal.
Taylor Anne Burtz (13:08):
Peter, did you have anything similar when
you finally, got out of yourlittle bubble too?
Peter Zdziarski (13:13):
Yeah, when I transferred to Boston my first
day, there was the day after mywisdom teeth were out.
I had two huge black eyes.
Taylor Anne Burtz (13:24):
Oh no.
Peter Zdziarski (13:26):
But honestly that.
Actually helped me make morefriends.
It was the first day.
Yeah.
And everyone's, let's go talk tothe kid with two giant black
eyes and ask him what happened.
Taylor Anne Burtz (13:37):
Julia, I'm gonna ask the hard question.
What was it like growing up witha mom who ran the foundation?
Julia Smith (13:45):
It was great, honestly, because I've always
known other people who have thesame disorder.
There's never a time I don'tremember knowing someone with
similar experiences and justbeing able, the way she was
about reaching out to doctorsand stuff and going above and
beyond about getting answers toher questions and reaching out
(14:06):
for other people as well,because there are issues that
other people had that.
I wouldn't necessarily have, butwe would learn for them and she
would always be open and involveme about stuff like that.
Taylor Anne Burtz (14:19):
Now we kind of touched on it when I was
introducing you two, but I thinkthat there really wasn't much
privacy when it came to youmedically, in any way.
We've always been an open book.
When it comes to your ownmedical experiences I guess, how
did that feel growing up?
Never really having a moment towhere, only a handful of people
(14:40):
knew it was as soon as somethinghappened, basically the whole
community knew with you.
Julia Smith (14:45):
Wasn't great because I literally had no
privacy.
Sometimes you just wanna go outand have normal day.
No one knows anything about you.
You can just ignore what's goingon.
That could never happen with me.
Taylor Anne Burtz (14:57):
How did that affect your relationship with
mom?
Not necessarily the privacything, the being so involved
with each other in day to day.
You, not only were you her jobas a parent, but, and also
running the foundation so youwere her entire life.
Julia Smith (15:12):
Well, I mean, I would just get annoyed, if she
talked to people about what wasgoing on with me.
Taylor Anne Burtz (15:17):
I don't know if all moms and daughters are
like this, but I do know thatyou and I were like this with
her, where any downtime duringour day, we would call her and
we would constantly be textingher throughout the day.
Obviously you two were veryclose, and I do think that a lot
of that has to do with how muchtime and how much y'all had kind
(15:37):
of gone through together.
Now, Peter, your mom has alwaysbeen a bear when it comes to
your health and your treatment.
Do you think that that has hada, big impact on y'all's
relationship?
Peter Zdziarski (15:51):
The reason why I'm gonna say not too much is
actually a good thing.
Mm-hmm.
growing up, I never thought ofmyself as different.
I just, I knew I had this thingand I just dealt with it.
And I think that's a really bigthing that other parents could
take away is, try your best tomake sure someone's just living
(16:11):
their life to the fullest, youknow?
Yeah.
They've never known any otherway, so.
Taylor Anne Burtz (16:16):
Absolutely.
And I mean, with you, it's alittle different for boys than
it is with girls, you know, youget through the main.
But basically that like three toseven where it's constant
nosebleeds, constant gum bleeds,just constantly having some sort
of issues.
And then with boys, it's kind oflike as you get older you are
(16:37):
seeing less and less problems.
And then with girls it's theother, you know, it's a whole
different thing cuz you'rehaving to worry about puberty
and having to plan all of that.
Peter Zdziarski (16:46):
And I mean, I always knew she was there when
something bad happened, so wewere ready to go.
We had the whole, you know Yeah.
Where we're going, what to doand, oh
Taylor Anne Burtz (16:57):
always had a plan.
Peter Zdziarski (16:58):
And I gotta say my dad too, because what he
would do is you know how all thenosebleeds seem to happen at
night?
So he would pinch it for me asI'm sleeping.
Taylor Anne Burtz (17:08):
Oh my gosh, that's amazing.
Julia had this she has thislittle contraption that does it,
but it's not like a intensepinching.
It's not like a closed pin, but
Julia Smith (17:19):
yeah.
It's got like a film thing onit.
Peter Zdziarski (17:22):
Yeah.
I needed that vice script.
Taylor Anne Burtz (17:24):
We have talked about how both sets a
parents were very good abouttrying to make your lives as
normal as possible and make youfeel like you weren't
necessarily all that differentin letting you kind of lead the
way as you were growing up.
Are you happy with how yourparents navigated your
diagnosis?
I mean, is there anything thatyou would've, like, now looking
(17:45):
back, is there anything that youwished would've been handled
possibly differently?
Peter Zdziarski (17:50):
Since I didn't really know how it was handled
it would've been whatever wasdone with teachers in the back.
I don't know how it they were,or how my mom spoke to'em or
what really happened, but Ididn't like being singled out by
teachers.
Julia Smith (18:04):
Well that was like inevitable with the community I
was in.
I mean, in the environment thatI was in, there was really
nothing else that could havehappened.
I had to be in private schooljust cuz the amount of
nosebleeds, the amount of issuesI had, there's no way I could
have been in public school.
With private school, theteachers, they would work with
(18:26):
me, they would send homework andstuff home.
They would, they just went aboveand beyond.
But that was just theenvironment that I grew up in,
the community that we had.
Taylor Anne Burtz (18:35):
Both of y'all actually took part in
extracurriculars.
Now, Julia, I know that, youdidn't do any like school sports
or anything, but growing up youdid do some sports.
And Peter, you did too.
What, what sports did y'alltake?
Did you do any, I wouldn't saybase jumping or anything, did
you ride a bike?
(18:55):
Were you wearing, full on bubblewrap when you did it?
Or were you allowed to, youknow, just wear a helmet?
Peter Zdziarski (19:02):
Well, if we're talking about bikes, I, wanted
to teach myself how to do a bikecuz my parents were too scared
of it.
So we just used some comfy grassand that's how I taught myself.
Yeah.
But other than that, yes I did Iswam and I did tennis and I
think those are great sports foranyone that has Glanzmann's.
Swimming is like huge.
Julia Smith (19:22):
Yeah, I did swimming in elementary, middle
school too.
And then I'm a baby.
I didn't like swimming in thecoldness and I was like, I'm
done I don't like being cold.
I did tennis until like aroundmiddle school and that's when,
whenever I would hit the balland stuff, my hands at the end
of practice would swell up andbe all bruised up from holding
(19:42):
the rack and hitting the ballall the time.
That's about the time couldn'tdo that anymore.
I mean, everyone's GT levels arelike a little different.
Yeah.
And then I did cross country sorunning and that was a good
sport.
And then all my friends weredoing like volleyball and.
stuff like that.
So I started managing for thevolleyball team so that way I
(20:03):
could at least like, stilltravel with them, still feeling
like a little left out from itall, but at least I could still
be with my friends
Taylor Anne Burtz (20:10):
What is your happiest memory as a teenager?
Peter Zdziarski (20:14):
I think it was probably swimming.
Swimming related for me.
I think the reason why I was,you know, cuz GT was the reason
why I was shoved into swimmingso young.
I wouldn't have been as good atit if I had other sports on the
side.
Yeah.
So like being good at swimmingwas really cool for me.
Taylor Anne Burtz (20:31):
Julia was really good at swimming too.
And then she quit cuz she gottoo cold.
But in her defense by the end,like especially the nighttime
meets that were outside, herlips would be blue, like at the
end of the night.
Peter Zdziarski (20:45):
One thing I wanted to ask though, did the
water help with your nose bleedsJulia?
Because for me that was the onething I felt like the water
continuously cleaning my nosewas good for it.
Julia Smith (20:56):
It probably did because, especially when I'm
talking about the indoor, stufflike that, that's when I quit
cuz I did not like doing it likeduring the winter and
everything.
But I loved it during the summerand during the summer I hardly
ever had nose bleeds cuz partlycuz of the humidity, partly cuz
swimming all the time.
So it probably would've helpedif I stuck to it in the winter.
Taylor Anne Burtz (21:15):
I think as we've kind of like paid more
attention and asked more andmore questions throughout the
community.
We started to realize too thatthe more active you are, the
less likely you are to havejoint bleeds.
And I feel like swimming, Imean, they, have older people
who have arthritis, they havethem go into the swimming pool
and everything to help withtheir joints.
So I feel it could, you know,not only would it be a sport for
(21:37):
you to actually be able toparticipate in, but it could
actually be very good for yourbody because you're able to,
exercise.
Julia Smith (21:46):
One thing that a lot of people don't realize is
like exercise is so essentialfor GT patients, for everyone in
general, but GT patients justcause it does help with
everything.
It helps prevent joint bleedsand all that.
At least in my experience.
Taylor Anne Burtz (22:03):
Because you, just from our own personal
experience with you, we would goto a theme park, you know, when
you were younger and after thefirst day you'd have to be in a
wheelchair because your anklesor your knees would start to
hurt really bad.
But then, you know, as you gotolder and you started,
especially college or Charlestonwhere you were walking
everywhere and then you went toTrujillo and the same exact
(22:24):
thing walking everywhere, youkind of didn't have those pains
anymore.
Peter, you do a lot ofweightlifting?
Peter Zdziarski (22:31):
I mean, there was a, short period where I did
nothing in college and itdefinitely, my body punished me
for it.
I bled a lot, my elbow, I had anelbow surgery and my elbow would
like lock up on me.
And then when I startedweightlifting, even my elbows
started to feel better.
And yeah, you just feel preparedfor bleeds when you go to the
(22:54):
hospital when you're in goodshape.
Taylor Anne Burtz (22:56):
You've told me kind of your best memories.
What's your worst?
Julia Smith (23:00):
The most annoying one was probably I took a trip
with my school.
To France and I was so excitedto go.
Spending time with my friends,seeing a new culture the first
time, all this, and halfwaythrough my trip I had issues and
had to go to the hospital, andcut it short.
And one of my teachers hadstayed behind and she was
(23:21):
looking forward to the rest ofthe trip too.
And so that was just a bigbummer.
The fact I was really lookingforward to it and I thought I
was prepared, ready for it couldbe out on my own.
And halfway through GT got inthe way.
Taylor Anne Burtz (23:34):
I think I can like speak for our family in
saying that, that's kind of likeone of our worst memories for
the GT through the GT aspectbecause it was kind of this like
more than usual, helplessfeeling.
For some reason, no one in ourfamily had a valid passport,
even though Julia was leavingthe country, except for my
(23:58):
grandmother.
And the French hospital wouldnot release her.
So she not only needed like aguardian there, but she needed
to be released into medicalcare.
My dad had always had it'scalled Med Jett, it's a
insurance.
Basically if you're anywherewithin the world that you're not
at a hospital that, is notnecessarily up to par, but
(24:19):
equipped to handle it and youwanna get home back to your
hospital or anything, thisprivate medical.
Insurance they'll go and they'llfly a nurse out to get you and
bring you back.
Oh like, Julia's kind of likeyou, Peter, where she's going to
not necessarily give the fulldetails of how bad it is.
Julia Smith (24:40):
I was fine Like the next day I just needed more
blood.
I lost a lot of blood.
So they gave me a transfusion, Iwas fine within the next day.
But they wouldn't release me.
Taylor Anne Burtz (24:51):
Well, Peter, what is yours?
Peter Zdziarski (24:52):
Mine happened freshman year of college, so not
too far back, but I'm countingthis.
because, you know, you go tocollege and you're, oh, I can
totally start fresh and I, don'thave to be the bleeder kid
anymore, but how
Taylor Anne Burtz (25:07):
Julia knows all about that
Peter Zdziarski (25:10):
So I was trying and we for some reason went to a
ice skating rink, and I keptfalling and falling on my butt.
And afterwards I had to go toschool, you know, go to class
and sit down and I couldn't sitdown.
Taylor Anne Burtz (25:28):
Oh, no.
Peter Zdziarski (25:29):
And I had to explain to so many people why I
couldn't sit in class or it hurtfor me to sit.
So that was very awkward.
Taylor Anne Burtz (25:39):
Yeah.
Peter Zdziarski (25:40):
But again, like how I met a lot of friends, I,
some of the bad parts, I madesome really good friends from
it, so that's good.
Yeah.
Taylor Anne Burtz (25:49):
Well, I know Julia's not been a fan of
explaining to new friends or newpeers that she has GT, and I
could see that, like Peter said,when you go off to college, you
kind of want that fresh start.
Let's talk mental health growingup is really hard.
I mean, we talked about it atthe very beginning of how middle
school is.
(26:10):
So it's hard enough as is as agirl, especially a guy too, and
I know that a lot of bullyingreally starts in middle school.
You know, did either of y'allever deal with that and, GT
directed or was it just kind ofa, you are different than us
type thing?
Peter Zdziarski (26:28):
I didn't really get bullied that much, I just
didn't like being able to notparticipate in things.
I have a feeling Julia isdifferent cause I know girls are
rough.
Julia Smith (26:38):
Well, I wasn't really bullied.
It was more being left out.
Yeah, but that was do to.
I missed half my seventh gradeyear and half my eighth grade
year.
Mm-hmm.
And so a lot of the girls that Igrew up with, they had grown
closer.
They went through essentialmiddle school experiences
together.
Yeah.
(26:58):
That I was not part of.
And they grew closer to eachother while I was not
necessarily.
So it was more of missing outtype thing.
That's what I would get.
Taylor Anne Burtz (27:08):
Yeah.
Julia Smith (27:08):
The most hung up on is that I would have to be at
home while everyone else iscontinuing on.
Taylor Anne Burtz (27:14):
When you got to high school, did it kind of
stay along the same or did yousee, improvement?
Julia Smith (27:23):
Yeah, there was improvement.
I still had my friends andeverything and it was fine.
It's just everyone knew I hadissues.
Peter Zdziarski (27:28):
It's just like a constant itch that's there and
you just kind of deal with it.
Yeah.
I think you get better at just,I don't know, living with it.
Taylor Anne Burtz (27:37):
Yeah.
Transitioning from high schoolto college, that is a rough one
as is because you're leavinghome for the first time,
especially if you are goingsomewhere that's a little bit
further away from home what,exactly was that like?
Julia Smith (27:52):
Great for me because like I'd go start over.
No one knows me as the weirdsickly girl who bled all the
time.
Yeah.
I could just go be normal, makefriends.
It is the closest I ever got tonormalcy.
Taylor Anne Burtz (28:07):
Mm-hmm.
Julia Smith (28:07):
Ever in my life.
Cuz just cuz I pretty muchignored the fact that I had GT
and lived my life and it wasgreat.
Peter Zdziarski (28:13):
That was about the same for me.
You're your own person soyou're, you get to start the way
you wanted to start kind of, ifthat makes sense.
I mean I was also going toBoston so like all the best
doctors were around and I thinkthat helped with my parents.
Julia Smith (28:27):
Yeah.
And I had less issues for somereason during school.
I'd have like nosebleedsoccasionally, but like I knew
how to pack it myself at home.
Didn't really need to go see anENT throughout school.
Taylor Anne Burtz (28:38):
I mean your, most common bleed is a
nosebleed.
And so when it comes to that,you're pretty self-sufficient
with that, aren't Julia?
Julia Smith (28:47):
Yes.
Very self-sufficient with that.
There's only been a few timesI've it was this past year at
Thanksgiving that I actually hadto go in and see a doctor and
that was the first time, I thinkfour or five years that I've had
to do that for a nose bleed.
So I'm pretty, pretty good atstopping them on my own or like
within a couple days or so.
Taylor Anne Burtz (29:07):
If there was anything that you could tell
your younger self.
what would it be?
Peter Zdziarski (29:13):
Look, I got tattoos.
Taylor Anne Burtz (29:17):
Julia got her first tattoo when she was, what?
Julia Smith (29:19):
First one I got when I was 19.
Second one I got when I was 20.
Peter Zdziarski (29:23):
How was that for you?
Julia Smith (29:24):
The tattoos were fine.
It was normal.
I got a piercing, like a navalpiercing when I was 18 and that
was when I was still living athome.
That one didn't go as great.
I think I blood for like sixhours for that.
Taylor Anne Burtz (29:35):
Yeah.
Peter Zdziarski (29:36):
Geez.
What about ears?
Do you have your ears pierced?
Julia Smith (29:39):
Ears pierced?
Fine.
That's normal.
Taylor Anne Burtz (29:42):
She just kind of like threw it all.
She went and got like one of themost painful spots tattooed as
her first tattoo, which is righton the ribs.
But the reason why she got itthere was because it would be
easiest to hide.
Peter Zdziarski (29:57):
That's smart.
So, you
Taylor Anne Burtz (29:59):
Julia, you didn't tell me what you would
tell your younger self.
How about don't worry, you'llfind your people in college.
That's true.
There you go.
Julia Smith (30:08):
But growing up in a small community, like you get
labeled as like a certain thingyour entire life and then you go
off to college and you're ableto fully be yourself.
And I feel that's the universalthing with everyone and that you
will find your people, and I didand I still have my people.
Taylor Anne Burtz (30:25):
I think that's great.
as someone who, you know,watched the struggles and
everything, I think that it'sgreat that you found people that
you are able to rely on andthey're able to rely on you when
you were off at college and itdefinitely made me feel better
so it is easy to only focus onthe negatives of GT.
I feel like that's kind of, it'seasy, it's the main thing, you
(30:49):
know, oh, I can't do thisbecause of GT, or I can't do
that because of GT.
What are some of the positivethings that Glanzmann's has
brought into your lives?
Julia Smith (30:57):
Well, the people, the community for sure.
Getting to connect with Peterand his mom and just all over
the country.
It's like a family whenever weget together because we've all,
even if we've never met inperson before, we all know each
other's stories.
We all know what we've beenthrough cuz we've been in the
same place.
(31:18):
And then when I went over toEurope with mom and we all got
together in England and gettingto meet everyone in the UK that
was incredible.
Cuz we all have sharedexperiences from different
cultures.
Yeah.
And just, I would've neverexperienced going through
visiting like Switzerland andall these different places to
England and Italy.
(31:38):
Meeting up with people with GT,just having friends spread out
all over the world.
Taylor Anne Burtz (31:43):
And it is like having a big extended
family feels like the communitycelebrates together, grieves
together is just really there.
And I'm very appreciative ofthat myself.
Peter, what about you?
I know she kind of gave youranswer too, I'm assuming by the
way that you came.
Peter Zdziarski (32:03):
I also think of like, GT brought certain
experiences to my life that Iprobably wouldn't have
experienced if I was normal.
So I think of all thoseexperiences I would've not had
if I didn't have GT.
Taylor Anne Burtz (32:17):
I can say just knowing both of you I think
that it has helped y'all excelin crisis management as well.
Peter Zdziarski (32:26):
Well, we're so used to fixing it ourselves.
Yeah.
So you wanna fix it yourselfbefore you go.
Taylor Anne Burtz (32:32):
Julia.
I mean, you definitely have atalent for nose packing.
I'm gonna eventually talk youinto doing a video tutorial.
What is something that you wannatell those in the community who
are still in the throes ofchildhood slash teenage dumb?
Julia Smith (32:47):
It does get more manageable.
It's missing out on sports andfriends is not the end of the
world.
You will work your way throughit and it is your normal and
it's not fair.
It really isn't fair.
But you work through it and itdoes get better.
And you will, like you said,find your people, find your
(33:12):
normal, your way of managing.
Peter Zdziarski (33:15):
Try your best just to treat them as being
normal because this is allthey've ever known.
So in their head, they're normaland yes, exactly.
They're not gonna know they'renot normal until that fun day,
but just be a kid for as long asyou can be
Taylor Anne Burtz (33:34):
and as much as you wanna wrap'em and bubble
wrap, try not to.
Yeah.
Yes.
Well guys, again, like I saidearlier, thank you for doing
this.
I know that this was not themost comfortable thing for
either one of y'all.
I tried not to ask too personalof questions even though I did
kinda get some eye rolls andlooks from both of y'all
(33:56):
throughout that whole thing.
I do want to end this with alittle bit of business.
So as we announced in the lastone, the GRF conference is
coming up, this coming July,2023.
It is going to be July 26ththrough the 29th.
(34:17):
And that is going to be inBoston.
We will be opening upregistration, I believe towards
the end of January.
It is going to be limitedbecause this is our first one
and because we're working with acertain budget, there are only
going to be a certain number ofspots.
It is gonna end up being a firstcome first serve.
We are trying to do travelgrants for at least 25 people.
(34:40):
And we are raising money for allof this.
We're raising money for theconference and we're raising
money for the travel grants.
You know, get, ask your doctorsor ask, you know, your friends
or anything to sponsor one groupto travel is$1,500.
So I feel like you know, we canfind that.
Definitely want people to beable to make it and the people
(35:04):
who wouldn't necessarily be ableto afford to travel to be able
to make it as well.
So Julian Peter shared a lot oftheir story with you today.
It is only fair that I ask youto do the same.
Go to our website,www.curegt.org and you can
submit your story under Faces ofGT if you haven't checked it out
(35:26):
before.
There are some great stories inthere and we're going to
continue to interview peoplewith Glanzmann's and won't
necessarily be the samequestions.
Everybody's story is a littlebit different, just like how
everybody's GT is different.
We have people who have gone alittle bit more crazy with their
extracurriculars and have donebarrel racing on horses and
(35:48):
stuff.
And we have people who've playedfootball and soccer as well.
So we will be having people comeout and talk to us in the
future.
And if you're interested inbeing interviewed by us,
definitely give us a shouteither through Facebook or
through our website to thegeneral email.
Welcome back to Bruised Not Broken
(00:03):
Glanzmann's Thrombasthenia.
This month's guests are twopeople who actually have
Glanzmann's Thrombasthenia, andwho are not ever really
comfortable talking aboutthemselves, but they're very,
very involved in the foundationand I was able to persuade them.
(00:23):
We have our very own PeterZdziarski and Julia Smith.
Those names should soundfamiliar.
Peter is our Producer as well asthe Vice President of the
foundation, and Julia is aCo-Founder and no pressure on
her or anything, but kind of thewhole reason the foundation was
started.
(00:44):
Now the majority of our supportgroup do know these two, but we
do have quite a few new peopleas well.
Julia is actually my littlesister and Julia and I's mom
founded the Glanzmann's ResearchFoundation in 2001.
Julia quickly became the face ofthe GRF and in the name of GT
(01:05):
sacrificed pretty much all ofher personal privacy growing up.
Understandably as Julia gotolder, she craved that privacy.
And when she went off tocollege, she kind of took a step
back out of the limelight and.
The death of our mom kind ofadded onto that timeline and now
she is wanting to tell her storyin her own words.
(01:27):
Peter was approached by my mom acouple of years before she
passed and he has been helpingwith the Facebook support group
and that aspect.
And then when she passed awayJulia and I actually made the
decision to approach Peter aboutbeing our partner in taking over
the foundation.
Mom and Peter's mom, Missy hadbeen very close for more than a
(01:50):
decade.
Peter and I first met when I was17, so that was 2007.
And even though I'd always knownhim throughout, you know,
stories and everything thesepast three years, honestly,
we've grown quite close.
I think of him as a brother ofsorts which is why this is gonna
be even more fun cause I'm notgonna hold back And I will say
(02:12):
that the foundation would not bewhere it is today without Peter.
He has been very paramount inour success, so I'm very proud
of both of them for agreeing todo this.
This takes a lot of courage.
And it's a step out of theircomfort zone.
And I, first I wanna say thankyou to both of you for doing
this.
Peter Zdziarski (02:31):
No problem.
Julia Smith (02:34):
Of course.
Taylor Anne Burtz (02:36):
Julia everyone knows what Peter's been
up to for these past couple ofyears, but I'm sure they're
curious as to what you've beenup to.
Last we heard really from likean update was that you had gone
off to college and I think somepeople were aware that you went
and studied abroad.
Can you tell us a little bitabout that?
Julia Smith (02:57):
I went to my second semester of sophomore year, I
had the opportunity to travel toTrujillo, Spain and live with a
host family for about three anda half months.
That was really interesting newexperience because it was a city
of 3000 people and nobody therespoke English it was great.
Taylor Anne Burtz (03:19):
I'm sure that was a fun experience and now
you're pretty fluent in Spanishand you had to walk everywhere
there, didn't you?
Julia Smith (03:27):
Yes.
definitely had to walkeverywhere.
Taylor Anne Burtz (03:29):
How was that?
Julia Smith (03:31):
I mean, it was fine.
I feel younger, that would'vebeen more of an issue, but now I
guess I'm stronger, it was finewalking everywhere.
No bleeds in my joints oranything.
Taylor Anne Burtz (03:40):
Well so when you got back is kind of, when
everything happened, you and momhad done a trip to Italy at the
very, very end of your studyabroad.
And then within a couple ofmonths of mom passing away,
COVID hit.
What exactly happened when COVIDhit?
Julia Smith (03:55):
Well, everything was kind of put on pause and
kind of took a break from schooland now I'm back
Taylor Anne Burtz (04:02):
What are you currently studying?
Julia Smith (04:03):
I'm art history major and my minor in Spanish of
course.
Taylor Anne Burtz (04:07):
I do wanna say that when she went off to
Spain and everything I don'tknow.
We kind of all were everybody inthe family was a little bit
hesitant and you were like, Ireally don't care.
I'm going.
You had kind of a backup planand everything and you didn't
let that stop you, which haskind of been the theme of your
life.
And I think that's been a themeof Peter's life too, is you're
not really gonna let yourdisorder stop you from going out
(04:30):
and doing the things that youreally wanna do.
One of the main reasons westarted this podcast was not
only to shine a light on GT as adisorder, but we also wanted to
shine a light on the experiencesof those with Glanzmann's.
This is probably hard because Ihave a hard time remembering my
own childhood, like early early,but, what is your first GT
(04:52):
memory?
When did you first realize thatyou had something that other
people didn't?
Peter Zdziarski (04:57):
That's kind of a hard question.
I think, my first bleed was likea GI bleed where it just started
out of nowhere and I had no ideawhere it came from.
But I don't know if I reallyknew I was different.
I actually had my first goodexperience in a hospital from
that.
I remember all the good parts,not the bad parts.
Taylor Anne Burtz (05:16):
That's good to hear though that the bad
parts didn't stick out in yourmemory.
Julia, do you have kind of asimilar experience?
Julia Smith (05:24):
Yeah.
I just thought it was prettynormal growing up and then just
explaining people like, oh, Ilike.
bleed sometimes just someclassmates would have peanut
allergies or something likethat.
I didn't think it was anythingodd.
Taylor Anne Burtz (05:35):
Yeah, it was your normal, so you didn't
necessarily realize anything wasdifferent.
So you each have siblings, butyou have vastly different
perspectives.
Julia, you're the baby of thefamily, and Peter, you're the
oldest.
Was there ever a moment when youfelt alienated?
Peter Zdziarski (05:53):
I'd say for me it was around middle school.
I feel like for most peoplemiddle school is like, where the
wake up calls kind of come inand you're like oh, oh, I'm
different
Taylor Anne Burtz (06:04):
middle school's rough.
Not only do you have to dealwith like the normal hormones
of, you know, kids figuring outmoodiness and everything, but
that's when.
A lot of bullying happens too,Julia.
Did you ever feel alienated?
Julia Smith (06:19):
Well, yeah.
From a young age.
Cause I would always go to thehospital with mom I guess you
and Milledge never reallyunderstood that.
It wasn't spending special timewith mom.
I feel like y'all thought of itlike that when it, that wasn't
what it was.
It was me having to deal withbleeds and everything.
I would feel alienated fromy'all because y'all would have
(06:39):
to kind of rely on each otherand have each other's back.
Which it's nothing hold againstyou or anything.
It's just how it was.
And then middle school growingup.
Not being able to participate involleyball and basketball and
stuff like that, other things myfriends were doing.
Taylor Anne Burtz (06:57):
Did you ever feel Peter, or did your, did you
and your siblings ever kind oflike fight about your mom
spending more time with you orhave they ever said anything to
you about
Peter Zdziarski (07:07):
No, I, I was actually gonna ask you how you
actually felt about it, sinceyou're here.
Taylor Anne Burtz (07:13):
Yeah.
Just to kind of let everybodyknow, there is an eight year age
difference between Julia and Iand a seven year age difference
between my brother and I.
So when Julia was born, I was,eight years old.
And I do remember it was my dadwas in his residency so he was
working all the time.
(07:33):
He kind of did, he picked up abunch of extra shifts and stuff
too to kind of help pay offstudent loans.
And so mom kind of leaned on meto help with millage.
I do think that, I mean, she'scompletely right in the view of
it seemed like Milage and I wereour own components separate from
her.
And it was a lot of the, becauseI had to kind of be there for
(07:55):
him when she was gone and try tomake things as normal as
possible.
And so there was some fightingbetween Milage and Julia
definitely when it came tomiddle school age.
Because he felt like, thingsweren't fair that she always got
what she wanted or, you know wealways have to do what Julia
wants and everything.
As we've gotten older and kindof looked back on it and really
(08:18):
kind of realized the wholeentire situation and also had
Julia speak up about a lot ofthings, it kind of turned and
it, the three of us became onebig component once they were in
high school really.
But there was a time there whereit did feel like it was kind of
(08:38):
Julia and Mom, and then me andMilledge.
Julia Smith (08:40):
Yes, definitely.
Taylor Anne Burtz (08:42):
Alright, so we did touch on middle school a
little bit.
Peter, you went to publicschool, right?
Julia went to private school.
So you both actually, again,have different perspectives on
this.
What was school like for you?
You know, growing up friends,tell me about that experience.
Peter Zdziarski (09:01):
When GT became very aware to me, it was not
fun.
Yeah.
I think being a guy, all theguys are signing up for football
and baseball and stuff, and youwant to do that too, and then
you can't, and then they ask youwhy can't you?
So that's when I kind of startedto stick out mm-hmm.
and at least when GT became veryapparent to me.
(09:22):
And then I mean, sometimes ingym class, but honestly I kind
of had deals with my gymteachers.
We were like, listen, that formthat you got,
Taylor Anne Burtz (09:31):
she's not gonna tell anybody that I
participated today.
Peter Zdziarski (09:35):
Yeah.
Like, let, let me do dodge ball.
I'll do volleyball.
I might not be able to play thenext day, but I'm gonna play.
Taylor Anne Burtz (09:42):
I think Julia's kicking herself for not
having that idea.
Well so Peter, was your school alarge school or was it a smaller
school?
Peter Zdziarski (09:51):
Oh, it was so small and that probably, that
probably helped with me beingable to ask.
Taylor Anne Burtz (09:56):
I was about to say cuz you were basically
were with the same kids fromelementary school on.
Peter Zdziarski (10:01):
Yeah.
And I probably being in a smallschool, one thing that really
annoyed me too was a teacher,asked two of my friends to look
out for me once and then theytold me that she said that and I
was not happy with that.
Taylor Anne Burtz (10:16):
Julia as the youngest child with two siblings
that went to the same exactschool as you at a very small
school.
Yeah.
How was your experience growingup?
Julia Smith (10:28):
It was good in the fact that everyone I went to
school with, they're likepractically family.
I had a graduating class of 50people.
Growing up, knowing them fromthat age on, it was, they knew
about me.
They knew to keep an out for me.
They, they knew y'all too, theyhad older siblings as well.
(10:50):
And so it's just I grew up witheveryone knowing so everyone was
pretty much just used to it.
But I would get left out for PEand stuff like that.
Not the best time.
I think it was middle schoolthat I finally decided, Hey,
it's not productive for me tojust be sitting on the sidelines
the whole time and watchingeveryone else do fun stuff that
I can't participate in.
(11:11):
And so I was like, I'll come forthe days that I can participate
and the rest of the time let mehave a study hall.
Taylor Anne Burtz (11:18):
Do you remember this Julia any time
that you transitioned fromelementary school up to middle
school or middle school up tohigh school?
Do you remember mom having ameeting with all the teachers
and your entire class?
Julia Smith (11:30):
Yes.
Okay.
Very much.
Taylor Anne Burtz (11:32):
Her heart was in the right place.
Definitely.
Her whole thing was raisingawareness, to her, the whole
school should know.
And so I do remember her kind ofsitting down with Julia's class
and explaining to them whatGlanzmann's was in middle
school.
And then I remember her talkingto a lot of the teachers too.
(11:52):
But Julia also had a lot ofteachers that I had.
And because it was such a smallcommunity, all of these teachers
knew when I came through thatJulia had GT because every
single science class that I wasin when we got to the genetics
portion.
I would use my family as anexample because of GT and it
(12:15):
being an autosomal recessivedisorder.
It was very well known withinour small community.
Julia Smith (12:21):
I didn't realize how fortunate that was until I
got to college.
I think I was two weeks in, inone of my classes and walking
into class and I go collegeCharleston.
I was wearing like jean shortsor something walking into class
by bare legs.
Which is normal in Augusta.
I walk around, no one saysanything, walking into class,
(12:41):
this girl behind me just gaspand she's like, oh my God,
what's on your leg?
And I'm looking down, thinkingthere's a bug or something in my
leg.
What is wrong?
And they're you have a hugebruise on your thigh.
And it's just then I having toexplain to my class and I'm
like, I'm fine.
Nothing's wrong with me.
Nothing's happening at home.
Just having to explain to themthat I have GT it is just, that
(13:04):
was like my first like, oh yeah,people dunno this, it's not
normal.
Taylor Anne Burtz (13:08):
Peter, did you have anything similar when
you finally, got out of yourlittle bubble too?
Peter Zdziarski (13:13):
Yeah, when I transferred to Boston my first
day, there was the day after mywisdom teeth were out.
I had two huge black eyes.
Taylor Anne Burtz (13:24):
Oh no.
Peter Zdziarski (13:26):
But honestly that.
Actually helped me make morefriends.
It was the first day.
Yeah.
And everyone's, let's go talk tothe kid with two giant black
eyes and ask him what happened.
Taylor Anne Burtz (13:37):
Julia, I'm gonna ask the hard question.
What was it like growing up witha mom who ran the foundation?
Julia Smith (13:45):
It was great, honestly, because I've always
known other people who have thesame disorder.
There's never a time I don'tremember knowing someone with
similar experiences and justbeing able, the way she was
about reaching out to doctorsand stuff and going above and
beyond about getting answers toher questions and reaching out
(14:06):
for other people as well,because there are issues that
other people had that.
I wouldn't necessarily have, butwe would learn for them and she
would always be open and involveme about stuff like that.
Taylor Anne Burtz (14:19):
Now we kind of touched on it when I was
introducing you two, but I thinkthat there really wasn't much
privacy when it came to youmedically, in any way.
We've always been an open book.
When it comes to your ownmedical experiences I guess, how
did that feel growing up?
Never really having a moment towhere, only a handful of people
(14:40):
knew it was as soon as somethinghappened, basically the whole
community knew with you.
Julia Smith (14:45):
Wasn't great because I literally had no
privacy.
Sometimes you just wanna go outand have normal day.
No one knows anything about you.
You can just ignore what's goingon.
That could never happen with me.
Taylor Anne Burtz (14:57):
How did that affect your relationship with
mom?
Not necessarily the privacything, the being so involved
with each other in day to day.
You, not only were you her jobas a parent, but, and also
running the foundation so youwere her entire life.
Julia Smith (15:12):
Well, I mean, I would just get annoyed, if she
talked to people about what wasgoing on with me.
Taylor Anne Burtz (15:17):
I don't know if all moms and daughters are
like this, but I do know thatyou and I were like this with
her, where any downtime duringour day, we would call her and
we would constantly be textingher throughout the day.
Obviously you two were veryclose, and I do think that a lot
of that has to do with how muchtime and how much y'all had kind
(15:37):
of gone through together.
Now, Peter, your mom has alwaysbeen a bear when it comes to
your health and your treatment.
Do you think that that has hada, big impact on y'all's
relationship?
Peter Zdziarski (15:51):
The reason why I'm gonna say not too much is
actually a good thing.
Mm-hmm.
growing up, I never thought ofmyself as different.
I just, I knew I had this thingand I just dealt with it.
And I think that's a really bigthing that other parents could
take away is, try your best tomake sure someone's just living
(16:11):
their life to the fullest, youknow?
Yeah.
They've never known any otherway, so.
Taylor Anne Burtz (16:16):
Absolutely.
And I mean, with you, it's alittle different for boys than
it is with girls, you know, youget through the main.
But basically that like three toseven where it's constant
nosebleeds, constant gum bleeds,just constantly having some sort
of issues.
And then with boys, it's kind oflike as you get older you are
(16:37):
seeing less and less problems.
And then with girls it's theother, you know, it's a whole
different thing cuz you'rehaving to worry about puberty
and having to plan all of that.
Peter Zdziarski (16:46):
And I mean, I always knew she was there when
something bad happened, so wewere ready to go.
We had the whole, you know Yeah.
Where we're going, what to doand, oh
Taylor Anne Burtz (16:57):
always had a plan.
Peter Zdziarski (16:58):
And I gotta say my dad too, because what he
would do is you know how all thenosebleeds seem to happen at
night?
So he would pinch it for me asI'm sleeping.
Taylor Anne Burtz (17:08):
Oh my gosh, that's amazing.
Julia had this she has thislittle contraption that does it,
but it's not like a intensepinching.
It's not like a closed pin, but
Julia Smith (17:19):
yeah.
It's got like a film thing onit.
Peter Zdziarski (17:22):
Yeah.
I needed that vice script.
Taylor Anne Burtz (17:24):
We have talked about how both sets a
parents were very good abouttrying to make your lives as
normal as possible and make youfeel like you weren't
necessarily all that differentin letting you kind of lead the
way as you were growing up.
Are you happy with how yourparents navigated your
diagnosis?
I mean, is there anything thatyou would've, like, now looking
(17:45):
back, is there anything that youwished would've been handled
possibly differently?
Peter Zdziarski (17:50):
Since I didn't really know how it was handled
it would've been whatever wasdone with teachers in the back.
I don't know how it they were,or how my mom spoke to'em or
what really happened, but Ididn't like being singled out by
teachers.
Julia Smith (18:04):
Well that was like inevitable with the community I
was in.
I mean, in the environment thatI was in, there was really
nothing else that could havehappened.
I had to be in private schooljust cuz the amount of
nosebleeds, the amount of issuesI had, there's no way I could
have been in public school.
With private school, theteachers, they would work with
(18:26):
me, they would send homework andstuff home.
They would, they just went aboveand beyond.
But that was just theenvironment that I grew up in,
the community that we had.
Taylor Anne Burtz (18:35):
Both of y'all actually took part in
extracurriculars.
Now, Julia, I know that, youdidn't do any like school sports
or anything, but growing up youdid do some sports.
And Peter, you did too.
What, what sports did y'alltake?
Did you do any, I wouldn't saybase jumping or anything, did
you ride a bike?
(18:55):
Were you wearing, full on bubblewrap when you did it?
Or were you allowed to, youknow, just wear a helmet?
Peter Zdziarski (19:02):
Well, if we're talking about bikes, I, wanted
to teach myself how to do a bikecuz my parents were too scared
of it.
So we just used some comfy grassand that's how I taught myself.
Yeah.
But other than that, yes I did Iswam and I did tennis and I
think those are great sports foranyone that has Glanzmann's.
Swimming is like huge.
Julia Smith (19:22):
Yeah, I did swimming in elementary, middle
school too.
And then I'm a baby.
I didn't like swimming in thecoldness and I was like, I'm
done I don't like being cold.
I did tennis until like aroundmiddle school and that's when,
whenever I would hit the balland stuff, my hands at the end
of practice would swell up andbe all bruised up from holding
(19:42):
the rack and hitting the ballall the time.
That's about the time couldn'tdo that anymore.
I mean, everyone's GT levels arelike a little different.
Yeah.
And then I did cross country sorunning and that was a good
sport.
And then all my friends weredoing like volleyball and.
stuff like that.
So I started managing for thevolleyball team so that way I
(20:03):
could at least like, stilltravel with them, still feeling
like a little left out from itall, but at least I could still
be with my friends
Taylor Anne Burtz (20:10):
What is your happiest memory as a teenager?
Peter Zdziarski (20:14):
I think it was probably swimming.
Swimming related for me.
I think the reason why I was,you know, cuz GT was the reason
why I was shoved into swimmingso young.
I wouldn't have been as good atit if I had other sports on the
side.
Yeah.
So like being good at swimmingwas really cool for me.
Taylor Anne Burtz (20:31):
Julia was really good at swimming too.
And then she quit cuz she gottoo cold.
But in her defense by the end,like especially the nighttime
meets that were outside, herlips would be blue, like at the
end of the night.
Peter Zdziarski (20:45):
One thing I wanted to ask though, did the
water help with your nose bleedsJulia?
Because for me that was the onething I felt like the water
continuously cleaning my nosewas good for it.
Julia Smith (20:56):
It probably did because, especially when I'm
talking about the indoor, stufflike that, that's when I quit
cuz I did not like doing it likeduring the winter and
everything.
But I loved it during the summerand during the summer I hardly
ever had nose bleeds cuz partlycuz of the humidity, partly cuz
swimming all the time.
So it probably would've helpedif I stuck to it in the winter.
Taylor Anne Burtz (21:15):
I think as we've kind of like paid more
attention and asked more andmore questions throughout the
community.
We started to realize too thatthe more active you are, the
less likely you are to havejoint bleeds.
And I feel like swimming, Imean, they, have older people
who have arthritis, they havethem go into the swimming pool
and everything to help withtheir joints.
So I feel it could, you know,not only would it be a sport for
(21:37):
you to actually be able toparticipate in, but it could
actually be very good for yourbody because you're able to,
exercise.
Julia Smith (21:46):
One thing that a lot of people don't realize is
like exercise is so essentialfor GT patients, for everyone in
general, but GT patients justcause it does help with
everything.
It helps prevent joint bleedsand all that.
At least in my experience.
Taylor Anne Burtz (22:03):
Because you, just from our own personal
experience with you, we would goto a theme park, you know, when
you were younger and after thefirst day you'd have to be in a
wheelchair because your anklesor your knees would start to
hurt really bad.
But then, you know, as you gotolder and you started,
especially college or Charlestonwhere you were walking
everywhere and then you went toTrujillo and the same exact
(22:24):
thing walking everywhere, youkind of didn't have those pains
anymore.
Peter, you do a lot ofweightlifting?
Peter Zdziarski (22:31):
I mean, there was a, short period where I did
nothing in college and itdefinitely, my body punished me
for it.
I bled a lot, my elbow, I had anelbow surgery and my elbow would
like lock up on me.
And then when I startedweightlifting, even my elbows
started to feel better.
And yeah, you just feel preparedfor bleeds when you go to the
(22:54):
hospital when you're in goodshape.
Taylor Anne Burtz (22:56):
You've told me kind of your best memories.
What's your worst?
Julia Smith (23:00):
The most annoying one was probably I took a trip
with my school.
To France and I was so excitedto go.
Spending time with my friends,seeing a new culture the first
time, all this, and halfwaythrough my trip I had issues and
had to go to the hospital, andcut it short.
And one of my teachers hadstayed behind and she was
(23:21):
looking forward to the rest ofthe trip too.
And so that was just a bigbummer.
The fact I was really lookingforward to it and I thought I
was prepared, ready for it couldbe out on my own.
And halfway through GT got inthe way.
Taylor Anne Burtz (23:34):
I think I can like speak for our family in
saying that, that's kind of likeone of our worst memories for
the GT through the GT aspectbecause it was kind of this like
more than usual, helplessfeeling.
For some reason, no one in ourfamily had a valid passport,
even though Julia was leavingthe country, except for my
(23:58):
grandmother.
And the French hospital wouldnot release her.
So she not only needed like aguardian there, but she needed
to be released into medicalcare.
My dad had always had it'scalled Med Jett, it's a
insurance.
Basically if you're anywherewithin the world that you're not
at a hospital that, is notnecessarily up to par, but
(24:19):
equipped to handle it and youwanna get home back to your
hospital or anything, thisprivate medical.
Insurance they'll go and they'llfly a nurse out to get you and
bring you back.
Oh like, Julia's kind of likeyou, Peter, where she's going to
not necessarily give the fulldetails of how bad it is.
Julia Smith (24:40):
I was fine Like the next day I just needed more
blood.
I lost a lot of blood.
So they gave me a transfusion, Iwas fine within the next day.
But they wouldn't release me.
Taylor Anne Burtz (24:51):
Well, Peter, what is yours?
Peter Zdziarski (24:52):
Mine happened freshman year of college, so not
too far back, but I'm countingthis.
because, you know, you go tocollege and you're, oh, I can
totally start fresh and I, don'thave to be the bleeder kid
anymore, but how
Taylor Anne Burtz (25:07):
Julia knows all about that
Peter Zdziarski (25:10):
So I was trying and we for some reason went to a
ice skating rink, and I keptfalling and falling on my butt.
And afterwards I had to go toschool, you know, go to class
and sit down and I couldn't sitdown.
Taylor Anne Burtz (25:28):
Oh, no.
Peter Zdziarski (25:29):
And I had to explain to so many people why I
couldn't sit in class or it hurtfor me to sit.
So that was very awkward.
Taylor Anne Burtz (25:39):
Yeah.
Peter Zdziarski (25:40):
But again, like how I met a lot of friends, I,
some of the bad parts, I madesome really good friends from
it, so that's good.
Yeah.
Taylor Anne Burtz (25:49):
Well, I know Julia's not been a fan of
explaining to new friends or newpeers that she has GT, and I
could see that, like Peter said,when you go off to college, you
kind of want that fresh start.
Let's talk mental health growingup is really hard.
I mean, we talked about it atthe very beginning of how middle
school is.
(26:10):
So it's hard enough as is as agirl, especially a guy too, and
I know that a lot of bullyingreally starts in middle school.
You know, did either of y'allever deal with that and, GT
directed or was it just kind ofa, you are different than us
type thing?
Peter Zdziarski (26:28):
I didn't really get bullied that much, I just
didn't like being able to notparticipate in things.
I have a feeling Julia isdifferent cause I know girls are
rough.
Julia Smith (26:38):
Well, I wasn't really bullied.
It was more being left out.
Yeah, but that was do to.
I missed half my seventh gradeyear and half my eighth grade
year.
Mm-hmm.
And so a lot of the girls that Igrew up with, they had grown
closer.
They went through essentialmiddle school experiences
together.
Yeah.
(26:58):
That I was not part of.
And they grew closer to eachother while I was not
necessarily.
So it was more of missing outtype thing.
That's what I would get.
Taylor Anne Burtz (27:08):
Yeah.
Julia Smith (27:08):
The most hung up on is that I would have to be at
home while everyone else iscontinuing on.
Taylor Anne Burtz (27:14):
When you got to high school, did it kind of
stay along the same or did yousee, improvement?
Julia Smith (27:23):
Yeah, there was improvement.
I still had my friends andeverything and it was fine.
It's just everyone knew I hadissues.
Peter Zdziarski (27:28):
It's just like a constant itch that's there and
you just kind of deal with it.
Yeah.
I think you get better at just,I don't know, living with it.
Taylor Anne Burtz (27:37):
Yeah.
Transitioning from high schoolto college, that is a rough one
as is because you're leavinghome for the first time,
especially if you are goingsomewhere that's a little bit
further away from home what,exactly was that like?
Julia Smith (27:52):
Great for me because like I'd go start over.
No one knows me as the weirdsickly girl who bled all the
time.
Yeah.
I could just go be normal, makefriends.
It is the closest I ever got tonormalcy.
Taylor Anne Burtz (28:07):
Mm-hmm.
Julia Smith (28:07):
Ever in my life.
Cuz just cuz I pretty muchignored the fact that I had GT
and lived my life and it wasgreat.
Peter Zdziarski (28:13):
That was about the same for me.
You're your own person soyou're, you get to start the way
you wanted to start kind of, ifthat makes sense.
I mean I was also going toBoston so like all the best
doctors were around and I thinkthat helped with my parents.
Julia Smith (28:27):
Yeah.
And I had less issues for somereason during school.
I'd have like nosebleedsoccasionally, but like I knew
how to pack it myself at home.
Didn't really need to go see anENT throughout school.
Taylor Anne Burtz (28:38):
I mean your, most common bleed is a
nosebleed.
And so when it comes to that,you're pretty self-sufficient
with that, aren't Julia?
Julia Smith (28:47):
Yes.
Very self-sufficient with that.
There's only been a few timesI've it was this past year at
Thanksgiving that I actually hadto go in and see a doctor and
that was the first time, I thinkfour or five years that I've had
to do that for a nose bleed.
So I'm pretty, pretty good atstopping them on my own or like
within a couple days or so.
Taylor Anne Burtz (29:07):
If there was anything that you could tell
your younger self.
what would it be?
Peter Zdziarski (29:13):
Look, I got tattoos.
Taylor Anne Burtz (29:17):
Julia got her first tattoo when she was, what?
Julia Smith (29:19):
First one I got when I was 19.
Second one I got when I was 20.
Peter Zdziarski (29:23):
How was that for you?
Julia Smith (29:24):
The tattoos were fine.
It was normal.
I got a piercing, like a navalpiercing when I was 18 and that
was when I was still living athome.
That one didn't go as great.
I think I blood for like sixhours for that.
Taylor Anne Burtz (29:35):
Yeah.
Peter Zdziarski (29:36):
Geez.
What about ears?
Do you have your ears pierced?
Julia Smith (29:39):
Ears pierced?
Fine.
That's normal.
Taylor Anne Burtz (29:42):
She just kind of like threw it all.
She went and got like one of themost painful spots tattooed as
her first tattoo, which is righton the ribs.
But the reason why she got itthere was because it would be
easiest to hide.
Peter Zdziarski (29:57):
That's smart.
So, you
Taylor Anne Burtz (29:59):
Julia, you didn't tell me what you would
tell your younger self.
How about don't worry, you'llfind your people in college.
That's true.
There you go.
Julia Smith (30:08):
But growing up in a small community, like you get
labeled as like a certain thingyour entire life and then you go
off to college and you're ableto fully be yourself.
And I feel that's the universalthing with everyone and that you
will find your people, and I didand I still have my people.
Taylor Anne Burtz (30:25):
I think that's great.
as someone who, you know,watched the struggles and
everything, I think that it'sgreat that you found people that
you are able to rely on andthey're able to rely on you when
you were off at college and itdefinitely made me feel better
so it is easy to only focus onthe negatives of GT.
I feel like that's kind of, it'seasy, it's the main thing, you
(30:49):
know, oh, I can't do thisbecause of GT, or I can't do
that because of GT.
What are some of the positivethings that Glanzmann's has
brought into your lives?
Julia Smith (30:57):
Well, the people, the community for sure.
Getting to connect with Peterand his mom and just all over
the country.
It's like a family whenever weget together because we've all,
even if we've never met inperson before, we all know each
other's stories.
We all know what we've beenthrough cuz we've been in the
same place.
(31:18):
And then when I went over toEurope with mom and we all got
together in England and gettingto meet everyone in the UK that
was incredible.
Cuz we all have sharedexperiences from different
cultures.
Yeah.
And just, I would've neverexperienced going through
visiting like Switzerland andall these different places to
England and Italy.
(31:38):
Meeting up with people with GT,just having friends spread out
all over the world.
Taylor Anne Burtz (31:43):
And it is like having a big extended
family feels like the communitycelebrates together, grieves
together is just really there.
And I'm very appreciative ofthat myself.
Peter, what about you?
I know she kind of gave youranswer too, I'm assuming by the
way that you came.
Peter Zdziarski (32:03):
I also think of like, GT brought certain
experiences to my life that Iprobably wouldn't have
experienced if I was normal.
So I think of all thoseexperiences I would've not had
if I didn't have GT.
Taylor Anne Burtz (32:17):
I can say just knowing both of you I think
that it has helped y'all excelin crisis management as well.
Peter Zdziarski (32:26):
Well, we're so used to fixing it ourselves.
Yeah.
So you wanna fix it yourselfbefore you go.
Taylor Anne Burtz (32:32):
Julia.
I mean, you definitely have atalent for nose packing.
I'm gonna eventually talk youinto doing a video tutorial.
What is something that you wannatell those in the community who
are still in the throes ofchildhood slash teenage dumb?
Julia Smith (32:47):
It does get more manageable.
It's missing out on sports andfriends is not the end of the
world.
You will work your way throughit and it is your normal and
it's not fair.
It really isn't fair.
But you work through it and itdoes get better.
And you will, like you said,find your people, find your
(33:12):
normal, your way of managing.
Peter Zdziarski (33:15):
Try your best just to treat them as being
normal because this is allthey've ever known.
So in their head, they're normaland yes, exactly.
They're not gonna know they'renot normal until that fun day,
but just be a kid for as long asyou can be
Taylor Anne Burtz (33:34):
and as much as you wanna wrap'em and bubble
wrap, try not to.
Yeah.
Yes.
Well guys, again, like I saidearlier, thank you for doing
this.
I know that this was not themost comfortable thing for
either one of y'all.
I tried not to ask too personalof questions even though I did
kinda get some eye rolls andlooks from both of y'all
(33:56):
throughout that whole thing.
I do want to end this with alittle bit of business.
So as we announced in the lastone, the GRF conference is
coming up, this coming July,2023.
It is going to be July 26ththrough the 29th.
(34:17):
And that is going to be inBoston.
We will be opening upregistration, I believe towards
the end of January.
It is going to be limitedbecause this is our first one
and because we're working with acertain budget, there are only
going to be a certain number ofspots.
It is gonna end up being a firstcome first serve.
We are trying to do travelgrants for at least 25 people.
(34:40):
And we are raising money for allof this.
We're raising money for theconference and we're raising
money for the travel grants.
You know, get, ask your doctorsor ask, you know, your friends
or anything to sponsor one groupto travel is$1,500.
So I feel like you know, we canfind that.
Definitely want people to beable to make it and the people
(35:04):
who wouldn't necessarily be ableto afford to travel to be able
to make it as well.
So Julian Peter shared a lot oftheir story with you today.
It is only fair that I ask youto do the same.
Go to our website,www.curegt.org and you can
submit your story under Faces ofGT if you haven't checked it out
(35:26):
before.
There are some great stories inthere and we're going to
continue to interview peoplewith Glanzmann's and won't
necessarily be the samequestions.
Everybody's story is a littlebit different, just like how
everybody's GT is different.
We have people who have gone alittle bit more crazy with their
extracurriculars and have donebarrel racing on horses and
(35:48):
stuff.
And we have people who've playedfootball and soccer as well.
So we will be having people comeout and talk to us in the
future.
And if you're interested inbeing interviewed by us,
definitely give us a shouteither through Facebook or
through our website to thegeneral email.
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