You feel alone when you go into these
things, but when you leave, you come out
as family.
And we were nervous going to the very
first one. But like I said, by the
time we left, we had so much information
and met so many friends
Mhmm. And made connections
that now a few years later, we have
people that we consider family all over the
country.
Welcome to Boundless Bee, the Hemophilia Bee Podcast,
the podcast standing with you from a family
like yours, presented by the Coalition for Hemophilia
Bee and in partnership with Balancing Life's Issues.
Today's guest is Mandy Abereg, a mom, a
fierce advocate, and a powerful voice in the
hemophilia bee community. Her journey has been anything
but easy, but it's one that shines with
strength and courage.
This episode is about resilience. It's about learning
how to fight for your family even when
you don't have all the answers and about
what happens when you find the courage to
show up, speak out, and build a community
around you. Welcome to the podcast, Mandy.
Hello.
Glad to be here. Well, it's nice to
nice to hear from you from
Southern Ohio, you said? Yes. South or Shadyside,
Ohio is where I'm from. Fantastic. So, I
guess just start by telling our listeners about
a little bit about your family history when
it comes to hemophilia b. We did not
know that hemophilia was in our family at
all.
And what we know, there is no
signs of hemophilia in our family. When Cooper
was born, it was a surprise.
And then I had genetic testing done that
I must be a spontaneous mutation.
And so tell us about finding out how
your son had it.
When Cooper was born, they did the vitamin
k shot, and he busted open about three
times, couple times on nurses that it bled
out on their clothing. And one time, he
bled out all down the front of my
mother in law's shirt, and we thought it
was odd, but nobody said anything. And he
stopped.
But the next day, when he was circumcised,
they took a very long time when they
took him away.
When they brought him back, the nurse had
a look of fear on her face, and
she's like, I gotta take him back.
Back. So then I got up and I
went down and I said, what is going
on?
And they're like, we can't get his bleeding
to stop. He won't stop bleeding.
So they ended up using nitrate sticks on
him to burn him,
and it got hit down to oozing. And
then that's when I said that we needed
to have blood work done to see what
was going on.
And that's how they came across the hemophilia
b diagnosis?
Well, at that point, the evening, the pediatrician
came in, and he looked at us and
said, something is wrong with your son.
And he kept saying, oncology
slash hematology.
And all I heard was oncology because my
mother passed away when I was three from
brain cancer. So,
of course, that's what I only heard.
And
he just said that they wasn't they wasn't
sure what it was.
But then by four days old,
we were
up at Pittsburgh, and they told us that
he was a moderate hemophiliac.
But, really, later on, we found out he
is a severe hemophiliac.
So I guess as a mother and
first time parent at this at the Yes.
26 years old,
first child. Our first child, we had a
miscarriage.
So then
we got pregnant with Cooper.
And, you know, to have this little baby
and to find out first off, he's covered
in bruises, and it wasn't nothing that anybody
did, but just the normal, you know, smack
in the back of a child when they're
born. Mhmm. He's covered in bruises.
They're telling us something's wrong. It it was
like we always say he came in like
a tornado.
So I guess tell us about
emotionally, you know, that experience at that time,
and what was that journey like in those
initial years of Cooper's life? It was like
you were always on guard. Like, it was
just
it's hard to explain. Like, it was just
like life was moving so fast, and, like,
in a way, you were kinda standing still
and everything just kept going.
And, like, my husband and I, we were
trying to figure
everything out and take the information in.
And my husband laughs about it now, but
we came home and we bought a notebook
and we literally wrote every question you can
think of about a child with a bleeding
disorder.
And now looking back through the questions, they
were funny. But at the time, it just
shows you how two young scared parents were
and wanted to know how that they could
raise a child with hemophilia.
Mhmm.
And I yeah. I know this story is
so familiar,
to so many people, but we know there
are listeners out there who are probably might
be experiencing this for the first time. So
tell us about, you know, wanting your family
to continue to grow. Like, was was there
reservations about
continuing to have more children? No. We always
knew we wanted at least one more.
And not that it wasn't there. We talked
about it. We knew it was a fifty
fifty shot, but we really did want another
child. And we thought that we had,
I don't wanna say the hemophilia under control,
but we thought we could handle if we
had another child with hemophilia. We met other
families that had more than one child with
hemophilia.
So then that's when we decided to go
ahead and have another child. I mean, so
what was that journey like? Especially, I think,
as your daughter came into the world, were
there any complications with hemophilia? So when we
found out we were having a girl, part
of me was a little, like
I wanna say take took a breath because
I thought, well,
then she won't more than likely won't have
hemophilia.
And
because we were always told it, and that's
what's hard in the the community now is
a lot of doctors say that women are
not bleeders.
Mhmm.
And
they kept telling me that her factor level
would be high. We would all have nothing
to worry about
because my level was higher.
And she was born, and we waited,
a couple months, and then we had her
tested. And, unfortunately, she was, like, twenty seven
percent.
So she is a mild hemophilia
ec,
mild hemophilia b, and
it's a little bit different. It's it's a
different journey and maybe even a harder
fight with her because I have to we've
had to fight to get Factor and
doctors to listen
Yeah. About her. And that that's a big
part of this message is, right, is is
advocate advocating for your children in the doctor's
office when they can't really advocate for themselves
quite yet. Yes. And then and just to
go back a little bit, there has been
a lot of work is being done in
the women's and hemophilia
B community to remove the stigma and to
remove the spline spots in the healthcare community
about the fact that women don't bleed because
they, in fact, do. Tell us about how
advocating for your children,
you know, in these initial
years of their lives got you connected to,
the Coalition for Hemophilia b.
So a dear friend of ours told us
about the coalition.
Our son was eight years old, and we
reached out. We went to our first meeting
or to our first symposium, and
it was amazing. We met so many people.
Everybody was kind. They kept coming up to
us, asking, you know, our names and, like,
you know, we at that time, we did
not take our daughter because she was only
three, but we took our son. And
it was just amazing because everyone wanted to
know, like, his diagnosis, and we've heard different
stories from different
individuals. And
it was just so welcoming. And it was
it was
empowering because we went into this one room
and they were discussing about and they were
like, does anybody have any questions or anything
they wanna ask the doctors or people that
were speaking? And I stood up and I
asked, should my daughter have factor at home?
And, you know, there's, like, 800 people in
the room, but every single person said yes.
A resounding yes.
It was yes. Yeah. And I
literally after we were done with that session,
I went out. I sat down. I called
my,
HTC, and I'm like, I need a meeting
with the head doctor next week.
And I did have a meeting with the
head
doctor at the center we went to, and
my daughter had Factor then at the house
on hand.
And if it wasn't for them
pushing me and making me feel like I
could make a stance to get it,
I I don't even know where we would
be. Yeah. And I I think what you've
done is you've highlighted so beautifully
what the Coalition for Hemophilia b does. Right?
It it welcomes you into a community,
and then it educates you on what you
need to know that you can so that
you can then advocate
for your children or yourself
with the doctors who are in charge of
what you need, right, for a healthy,
long life. So I I think just I
wanted you to just maybe talk a little
bit about
the uncertainty and the nervousness of going to
the symposium for the first time because I
know for a lot of families,
it's really difficult to go. And if you
have any advice
about getting yourself to step through that door
and get yourself out to one of these
community events. To be a part of the
community, like, when you start going to events,
I know it's overwhelming because you think,
oh my goodness.
What are they gonna you know, what am
I gonna learn? You know, who am I
gonna meet? You feel alone when you go
into these things, but when you leave, you
come out as family.
And we were nervous going to the very
first one. But like I said, by the
time we left, we had so much information
and met so many friends
and made connections
that now a few years later, we have
people that we consider family all over the
country.
Mhmm. So it's important
to help your child
to definitely go or yourself, if you don't
have children, to go to these events
because they're only gonna help you. You know?
So you can help yourself, basically. Mhmm. Yeah.
Yeah. No. It's so well said. So I
guess as you continue sharing what you've learned,
can you share some, like, maybe some things
you wish you knew from the beginning that
you now know? Maybe specifically over how to
talk to the doctors
or maybe insurance coverage, proper medications, maybe how
to get your voice through
those channels so that you are being heard?
I think it and that stems back to
going to events. I think it almost have
to
you have to know what you're you have
to know the information before you go in,
especially with a doctor. Like,
if you go to event and you hear
about that there's different products or this and
that, it's nice that you have the different
pamphlets or things that you can go in
and show them what you learned at the
events.
And I think it's important to always write
everything down. So when you go in the
room, you might get flustered and not know
what to say because then the doctor's gonna
be like, well, no. This is what we
need to stay on and this and that.
And I understand that they have the degree,
but that doesn't always mean that they are
correct, and they need to be able to
listen to you.
And if you have everything written down and
ready,
then even if you get a little flustered,
you're able then to settle yourself and go
back and read what you need to to
them. So you can get your point across.
Yeah. Yeah. That's really smart. And, you know,
not for nothing, when our first child was
born,
I did have a list of things that
I was supposed to say because I knew
my wife would not be in a position
to advocate for herself necessarily, and I was
gonna be way too emotional and a mess
to be able to eloquently
get a point across. Right? So I did
have that list. So, yeah, very, very good
advice there. Something we talked about, you know,
before we did this recording was what you
tell new families about building a plan. Can
we can you talk a little bit about
that? Things to help your children is camp.
Camp is a
huge thing with my children. They have learned
so much at camp. They've made close friends.
They learned how
my daughter is still learning, but she ended
up pretty much sticking herself for the first
time at camp. My son has been
from Symposium and then also at camp learning
how to infuse himself,
and it just builds confidence and know that
they're not the only ones out there.
And I think with the school, it's kinda
the same way when you
take the information to them
and fill them in on what's going on.
And your kid feels strong enough too that
when they can go into the classroom, like,
Cooper has went in and told his friends
about hemophilia and spoke to his class about
it. And my daughter
has said things to her friends. It just
helps it makes them feel, one, not alone
when they go to camp and different things,
but also proud of themselves. Like, yeah, they
have this, but they show how they can
push through, and they're still a normal person
even still having, you know, hemophilia b.
Yeah. Yeah. And I guess maybe talk a
little bit about, as a parent, what that
feels like because we know that's a huge
transition for parents. There's going to come a
day where your child is going to be
closer to an adult, and they're gonna have
to do all of this on their own.
Right? So I think even at this early
age, maybe you start to see some of
these signs of ownership. Can you talk a
little bit about that just as a parent?
It is I would have to say it's
a double edged sword. Sure. It
I'm very proud of my son.
I know that
if he had to do it, he could
do it all on his on his own,
which is wonderful, and I'm proud of that.
But, also, it's it's hard too in a
way because, you know,
this has been you know, his whole life
is what we have done. This is how
we do it, you know, and then to
hand
the reins over, it it's hard, but you
want that because I want him to live
a a full life and know how to
do it and travel and live on his
own. He has to know how to infuse.
Mhmm. Absolutely. So well, thank you so much
for being here. And I guess if you
could just leave listeners or maybe with some
advice about what to do when you feel
overwhelmed, maybe
what you would have told yourself back at
the beginning of this now that you know
what you know now.
I would have to say definitely join the
Coalition for Hemophilia
b.
I would I would have known about them
earlier on because I wouldn't have felt so
alone, my husband and I, and we would
have been able to maybe direct how things
were going earlier on in my son's care
if we woulda had the community that we
have now. And the friendships that we have
are very dear to us. So I would
say
even if you're not able to come to
coalition meeting, if you're not ready for that,
at least go to your local chapter and
start going to events because having
people that
live similar lives and understand what you're going
through is very important.
Well, thanks again for your message. And this
has been Boundless b, the Hemophilia b Podcast,
a podcast standing with you from a family
like yours presented by the Coalition for Hemophilia
B and in partnership with Balancing Life's Issues.
And don't forget to check out hemob.org.
There's all kinds of amazing resources,
but specifically
you can navigate to upcoming events to check
out what kind of events are happening so
that you can get involved in the community.
And thank you again for your time, Mandy.
Thanks for having me. Of course. Until next
time, everybody. Take
care.