And I remember thinking if this could happen
to
me as a clinician coming in, telling people
something is wrong and then
minimizing
my experience, it can happen to anyone and
it still happens to many people to this
day. And it almost took my life, and
I imagine that many women
die unnecessarily
because of it.
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Today's guest is someone who's been challenging outdated
systems and winning. Doctor Amber Federizo is a
nationally recognized nurse practitioner,
regulatory pioneer, and passionate advocate for women living
with bleeding disorders.
Her work has helped change how clinical trials
are led, how underserved communities are reached, and
perhaps most importantly, how women are heard. This
conversation is about power, specifically the power of
language, access, and advocacy,
and how a life changing word can change
someone's entire experience of care. Welcome to the
podcast, Amber.
Thank you. And it's, always a pleasure and
an honor to be here. Every opportunity to
reach, you know, get this education out there,
reach a broader audience, I appreciate. So thank
you for the invitation.
Of course. So let's start with your journey
into advocacy and I think what we'll call
innovation. So how did your journey in clinical
care lead to the broader kind of advocacy
and regulatory work you do now?
Yeah. So it's been
fifteen years now, which is amazing to me
that it's been already fifteen years.
And when I first started,
I realized that a lot of the questions
that we thought we were asking, we really
weren't. And the assumptions that were made based
on that asking those questions were that people
weren't bleeding or they weren't having issues or
they
were just fine. But in truth, the reason
that a lot of data is missing is
because we were not asking the questions. And
so as I began asking these questions, it
led
to more questions and, you know, this desire
to look further into it over time. And
so very early on,
I started working with with women and asking
these questions and developing
this whole clinical care that needed to be
set for them as well.
Absolutely. And and so
what, I guess, inspired you to focus on
women in rare diseases?
Yeah. So, people ask me that all the
time. And when they find out that my
husband and my son also have bleeding disorders,
they assume that that brought me into the
community, but, they were actually diagnosed as a
result of me coming into the community.
I
had my husband experiencing four hour nosebleeds, and
his family had always thought that was a
100% normal.
And in learning through all of this, I've
told him that is absolutely not a 100%
normal, and so they were diagnosed after I'd
come in. But what brought me into the
focus of women was actually my own experience
as a clinician. I unfortunately lost a sec
second trimester pregnancy,
and I was taken to the,
ER because I was bleeding too profusely. And
originally, I had been told
this miscarriage will be similar to sort of
a period. You'll have cramping, you'll have pain,
but it won't be so bad. And when
I got to the ER, like, I had
new I knew something was wrong. Like, you
just get this feeling, this sense of impending
doom. You know something is wrong. I had
tried my best to stay home.
I, as like many health care clinicians, avoid
going in with as much of my fiber
being as possible. So when I was brought
in, it was still that same story of
just let it happen. It's a miscarriage.
We're just gonna put you in a room.
You know, we'll give you your privacy. And
I had
the most extreme
pain,
And, they started giving me pain medication.
And I, over the course of a few
hours, started to really get really tired and
cold. And so they kept bringing me blankets,
you know, bring her comfort, and I wasn't,
you know, on a monitor or anything like
that. So they were giving me pain meds.
They were giving me blankets upon blankets. And,
unfortunately,
what ended up happening was I had actually
been bleeding out. So my
OB, who thank god had come on shift
in the morning reviewing the records of the
hospital, saw that I was in the ER.
He came down and was like, hey. What's
going on? I hadn't been contacted
because the ER was just like, oh, it's
a miscarriage. We don't need to call the
OB.
And, he pulled back the blankets, and underneath
all of those blankets, blood just spilled out
onto the floor.
All I remember of any of this was
him screaming
at everybody
and then waking up in the ICU. And
I remember thinking if this could happen to
me as a clinician coming in, telling people
something is wrong and then
minimizing
my experience, it can happen to anyone and
it still happens to many people to this
day. And it almost took my life, and
I imagine that many women
die unnecessarily because of it.
Well,
sorry. So sorry for your loss, and and
thank you so much for sharing such a
powerful and vulnerable story. And I think for
many of our listeners, a very familiar one.
Tell us about how that experience
and not being listened to, not being heard,
how should we phrase
what that moment was like for you, and
what do listeners need to know about
being in the emergency room or with their
health care professional?
Yeah. It's a challenge because, you know, we
we emphasize advocacy. And then sometimes when we're
constantly telling people you need to listen or
this isn't right, it can actually make them
dismiss us more. So we have to be
very careful in crafting how we speak, which
is unfortunate
to get our
best efforts across. And I will always tell
women who feel like they have failed in
getting their goal that I too failed in
getting my goal at that time because I
was in such an emotional state
that I was not even capable of advocating
correctly
for myself. So we are going to fail
in communicating
our needs. That's gonna happen, but we have
to continue trying and improving upon it each
time. Every time we do, it provides practice
and it provides a foundation for the next
time. That's hard to tell women that there's
going to be those failures because it's, almost
a learned helplessness. Right? Like, you didn't get
what you needed the first time, so why
should you go back? Why should you try
again? And there is moments of
hope in trying again. And so that's the
challenge that I hope that this
conveys is that I could have easily taken
that situation and also been like, what's the
point? You know, women aren't gonna be heard.
They're not gonna be listened to. This is
never going to change when in reality,
it can change and it can help the
next person. So I tell all the women
that I encounter that you carry
the women
from generations before with you. They show up
with you
to your appointments. They are there with you.
You are never alone. They went through that
so that you can have a successful appointment
so that you can be heard in the
future. So people who feel alone
going through those appointments know that you carry
all these women who have struggled on this
journey, and they are with you in those
appointments.
What what a powerful metaphor,
to kind of visualize and and feel in
those moments. Let me ask, is there any
benefit to maybe those around you, whether it's
a partner, caregiver? Now, I'm thinking about maybe
I'm the father of somebody who has hemophilia
B.
When it comes to advocacy, what's what's their
role in in being there present with with
someone like yourself in that moment?
Yeah. And it's it's a difficult,
perspective because a lot of men feel like,
you know, it's it's a women's these are
women's issues, these are women's conditions, you know,
what role can I play? I don't have
a uterus. I cannot,
carry children, but the role is to,
be there. And not just be there, but
when you feel like they're not being heard,
step in and repeat what it is they
are saying until there's an answer. Because we,
unfortunately, even in 2026,
have this notion
that if a male is angry,
you have to address that versus a woman
who is angry. So a
father or a husband
being angry
is scarier to clinicians
than a woman being angry, which it's really
in that conversation that if you feel like
they're not being heard, then you need to
repeat it so that they they can be
heard and you carry that voice and support.
Because some people, they just they don't say
anything, and that is sort of silent
agreement. And people take that as well. He
must think that this is also an exaggerated
symptom because she keeps complaining about this, and
your role as a male is to say
no. This is not normal. We live with
this. We suffer with this as a family.
It impacts
me as well, and we need to address
this. So it's really important that men show
up because without men, this is not possible.
This is not a women's only efforts. Without
men, we will not make any progress.
Yeah. And I'd like to speak a little
more to that because during our pre call
I had mentioned, you know, I'm, I'm a
male interviewer interviewing
a female about female, you know, blood related
issues.
And, you know, you said something really profound
for me, which was along these lines of
like, well, it is our role
to take part in being educated
on on
the medical side of it all. So can
you speak a little more to
kind of like that role and how if
if I'm a male and I'm uncomfortable,
what are some steps I can take to
get to a place of being able to
be a better advocate for my daughter or
my wife or my partner
in those moments?
The biggest thing that is going to help
is to also be engaged in the education
because we've, as a society, have set up
this scenario where
menstruation is a stigmatized non talked about thing.
So men are like, oh, no. No. I'm
not gonna talk about that. And when you
don't talk about it, you you can't recognize
the signs that they're suffering. You don't know
what you're looking for. And when the time
comes that you're in that discussion
with someone, with a clinician,
you will not feel confident leaking out because
you won't know normal from abnormal. So I
encourage people when you go to a
conference or an educational
session, such as we have coming up in
April, which I will be
presenting. So many people come to that session
and and learn. And when you know and
you learn and you have that education, then
you have that confidence to say, this isn't
this isn't right, and this isn't normal based
on what I know instead of, well, this
is a conversation between them because this is
a topic in which I'm not well versed.
Maybe speak a little bit to this is
the idea of, like, a stupid question or
it might feel like a stupid question. Can
you, like, maybe talk a little bit about
what is that entry point for someone? Like,
I'm I'm at the conference and I see
the Women Bleed two booth. I mean, I'm
uncomfortable. What's a question I can go ask
to kinda help break that barrier for your
for ourselves?
Yeah. You'll be amazed at how supported you
will be if we are just genuine nature.
We approach a booth like that, and we
say, you know, these conversations make me uncomfortable,
but I'm here, and I wanna learn. And
what do you think would be best? How
do you think it would be for me
to start? What, in your opinion, do you
think I should start with? And that kinda
opens the conversation from whomever is there to
say, hey. We have this resource and this
information. You can start here, or we have
these programs, or we have these sessions.
It's opening that door to the conversation, which
I know is it can be scary and
hard to do. But
if you imagine all of these people come
to these events hoping that someone like you
will come up and ask a question because
they do want to spread this awareness in
education. So there is no such thing as
a stupid question. There are only
unanswered,
unresolved, and silent issues and suffering that if
you don't ask that question,
just continues
on. Yeah. And, well, I guess what I'm
hearing is if you don't have the question,
maybe just acknowledge how uncomfortable you are and
that that can even be the entry point
to education like you're saying. So thank you
so much for all that. And I think
what I wanted to talk about now is
a lot of the work you do focuses
on language as a barrier to care and
specifically that word carrier. So can we talk
about why that term is problematic for women
and girls in the bleeding disorders community?
Yeah. So I stopped using
the c word many years ago,
because it caused so many problems and it
causes
so much confusion, and it really does a
disservice to women in bleeding disorders.
Because
in no other disorder in which we have
individuals who can suffer from the condition,
do we, as clinicians, go out in literature
and research and refer to it as carrier.
And what I mean by that is,
you know, we talk about women gaining care
and accessing care, but then we call them
carrier, and then there's confusion about what does
that mean? Are they low? Are they not?
Are they having symptoms? Are they not? And
we are trying to splice that out, but
I think we just have to leave that
word behind entirely. In my practice, I've taken
care of patients with sickle cell trait.
And you have a conversation about what that
means genetically,
how you might have to assess that individual
for, other things for risks, and you have
others with alpha male trait who you also
have to educate. And it may manifest in
them in a certain way, and you have
to monitor them for iron deficiency because things
don't always look the way they are, but
we call those traits.
So in women with this, it should be
identified as trait. And then from there, we
evaluate whether they are expressing the worst of
it, or we need to provide the education
on the genetic potential in the future for
them so that we can have these conversations
that aren't shrouded in our inability to move
on. We've spent so much time defining carrier
that we've spent almost no time in the
research of how do we approach them, how
do we treat them, and how do we
evaluate
that treatment
on an ongoing level. So there's no care
guidelines. There is no pathways, and there is
no algorithms even set out by the American
Society of Hematology in this regard. There are
many papers
on the definition of carrier,
and I just feel that we just need
to leave that behind because we're just gonna
spend another decade
talking about it instead of moving on and
moving forward with
women have mild hemophilia or they have moderate
hemophilia. And in my own experience,
I actually had dropped hemophilia as well.
So I had women who were presenting to
the ER with lower levels and not being
heard, and they weren't even contacting myself.
And what I ended up doing was changing
their medic alerts to say factor eight deficiency,
factor nine
deficiency. And it had a added benefit for
men as well because I found out that
men who were presenting to hospitals that we
were not affiliated with were actually being appropriately
treated because I had some people with
hemophilia b who were being treated with factor
eight.
As you know, people type in hemophilia or
anti hemophilia or whatever. Hemophilia b doesn't tell
you it's factor nine deficiency. But if you
make a medical alert that says factor nine
deficiency and the percentage,
it is a clear message. It is a
clear statement, and it provides that information.
And these women then came back and told
me, well, they saw that it was factor
eight deficiency, but that didn't clue them into
that it was hemophilia and all the stigma
that comes with that word. And so all
they saw was it was factor eight deficiency.
I better make a call.
And that changed everything for them. Just
semantically, that language
improved their odds of having a better outcome.
Yeah. I know. It's so interesting because so
many of the interviews I've conducted, there there
is the knowledge gap with a lot of
healthcare providers when it comes to hemophilia.
And I think it's so incredible that just
these tiny shifts in language
can get you the care you need. I
know specifically, like, with EMS services, there there
are some that don't even they can't even
treat a hemophilia exist or a hemophilia incident,
because it's not taught. Right? And
going back to that word carrier
versus trait,
you know,
to me, it seems like carrier almost assigns
fault
to
to,
you know, the mom and maybe speak a
little bit to that.
Yeah. I mean, so women have carried this
burden of guilt for since it's been documented,
and not even the queen could, as a
as a queen of an entire country, try
to escape fault. So they blamed Leopold's condition
on her desire to have pain control during
childbirth. So if you can imagine being the
queen of a country and having your son's
disorder being blamed on your pain control. And
so the guilt is goes way back and
they carry this forward and it gets carried
through as generational trauma. Mhmm. But I always
have to remind people, men and women pass
this on genetically,
fathers pass it on, but we don't talk
about father guilt. And I recognize that for
men, this is a very important gap that
they have as well that we are not
addressing. So there are men who, in my
opinion,
would benefit from these conversations
as well because they're passing this on and
seeing the suffering of their daughters. But everyone
talks about, you know, women's guilt and passing
it on, and everybody passes this this genetic
trait on. And I know one thing you
wanted to touch on was the idea of,
like, oral contraception. So talk to us a
little bit about, like, the stigma there in
clinical discussions, and I guess the context is
when it's being used as bleeding management,
not necessarily contraception.
Yeah. So that's another one that is a
great example to kinda go back to what
you had spoken of before.
It assigns this idea
of the outcome. So it assigns this blame
of, like,
they're using it for,
sexual
reasons, and they're being promiscuous. And so, therefore,
they are on it, and it's being used
for birth control and all that that entails
with it and all of the access that
can be limited by that particular use.
And in this setting, we're using it for
hemostatic
control.
So we are not using it to prevent
birth. We inform and educate women that a
side effect of this treatment
results in the decreased potential for them to
become pregnant. But we have a lot of
other medications
that could accidentally
terminate a
pregnancy or cause issues as well, and we
don't label them by their outcome. It is
only in oral contraceptives
that we assign this notation to what it's
used for
as opposed to,
other medications that we do not ascribe this
sort of,
symbolism
to it. And so I use the term
hormones because they are hormones
at the end of the day. Just as
testosterone
is a hormone, estrogen is a hormone,
and progesterone is a hormone, and men have
these hormones too. And that's interesting that I
always encounter that people forget that. They think
men only have testosterone and women only have
estrogen and progesterone, but that's not the case.
We both have
but we have all three. And so if
you treat someone, you're utilizing hormones to get
to a certain outcome.
Again, is in such a brilliant,
simple
pivot away to to a a semantic that
is is just less of a stigma. Right?
And and whether you agree with the the
stigma or not, it it it it is
there. Right? It's,
it it's really it's really brilliant work. So
can we, let's just focus and talk specifically
about the hemophilia b community. And first, I
wanna ask, how did you get connected to
the hemophilia b community?
Yeah. So I can't recall what year it
was and how it might have been at
least
eight years ago.
I was contacted
by a member who said, I heard you
have this presentation for women that talks about
sexual health and bleeding disorders,
but does not undervalue it or speak of
it superficially.
And I said that is accurate. I do
have a very medically accurate presentation
for women to understand bleeding that can incur
during sexual intercourse.
And so they flew me out to one
of your guys' national conferences, and I spoke
on it. And it was a great opportunity
to bring that education, and I still to
this day
provide that content because it's been well requested.
It's been interesting journey with that content because
many patients had asked, you know, national organizations
to provide the content, and some outright said
those years ago that they didn't wanna be
associated
with the stigma of the content.
Some manufacturers had said that they did not
wanna be associated either. So it was an
interesting journey for me hearing all these no,
no, no, no, no, no's. And then finally,
some people who were like, people are asking
for this. Let's bring them the content. So
those early pioneers
in in this organization who said, let's bring
let's bring her out. This is a risk
that we're gonna take and see what happens.
And then it just kinda grew and blossomed
from there.
Yeah. And I I think it also speaks
to, you know, the coalition.
It's real life.
We bring discussions, we bring education because,
that's what we're experiencing
and we can't shy away from the stigmas
or what society chooses to label something as.
So, you know, again, the fact that you
are in this community and welcome and continue
to provide such important education is just so
incredible. So I guess maybe
what do you feel like is
the biggest problem,
or hurdle maybe semantically or or in the
doctor's office
when it comes to hemophilia b? I think
the challenge
really at this point in time is where
do we go from here? In my opinion,
the comprehensive
model
was really needed and effective for the time
in which it was implemented.
But in 2026,
is this the most efficient care to not
only get the outcomes that we need, but
provide
that care in a meaningful way?
And what I mean by that is, you
know, with lower joint bleeds is a requirement
to say you have to see a physical
therapist or you have to see, you know,
a social worker. Is that does that need
to move into a model that meets the
needs of people in today's time? I don't
think that it has evolved
to meet those needs. In Europe, and this
was just, presented at EHAD, they are moving
towards an accountability
of their national centers. So they're standardizing
their centers because what often happens is
experiences vary widely.
They vary regionally, and that really shouldn't happen.
There should be a
expectation of care that you will receive
when you are accessing institutions that are centers
of excellence. And so there should be a
standardized
guideline that is agreed upon, and then those
can be evaluated
to see whether or not they're meeting that
metric
or not. So that's a great way to
say,
yes. This matters, and, yes, it is impactful
versus just, yes. It matters. Right now in
The US, there really isn't the second step
of
is this being effective. And we have a
real big equity problem with women and their
ability to access
the same equitable level of care that we
provide men. And so these women
sit outside of a system
that was not designed to exclude them, but
it has over time evolved that way.
Yeah.
And I I think one thing that comes
to mind, and I believe it's within the
last,
I wanna say three years, but they finally
started testing,
you know, menstrual products with actual blood.
You know, that was something
have you heard that?
Yeah. So I actually bring this up in
my ministration presentation, the idea that, you know,
we are not Smurfs and we do not
bleed blue.
We need accurate presentation
even within commercials.
But, yes, even the absorptive nature of the
products that are utilized
and how they are built, what they are
made with, because sometimes they're made with formaldehyde,
which is not something you should continuously expose
somebody to. But in bleeding disorders, people sometimes
will have really long periods if they're not
if they don't have good management and care,
so they have to use these products with
an exposure that is much higher than any
other woman who would be utilizing them. And
so it is advancing. I really appreciate that
there's much more options for women than there
ever was before,
But I also worry because with more options
and more protection, there is ability to hide
it more. So women have this notion that
using
a pad and a tampon as a bleeding
disorder as a patient is completely normal, and
it is not. Wearing an overnight diaper while
it protects your sheet and your bed does
nothing to protect your quality of life.
And so while the products are improving, the
chair is not behind it improving as well.
So
I guess as we kind of start to
wrap up here, can you maybe highlight a
story or,
you know, a personal moment that kind of
illustrates why this matters so deeply to you?
Yeah. I mean, there are so many to
speak on, but when you have a woman
who comes to you and I've had many
where
in the beginning session, it's it's, you know,
they feel bad because they they're very angry,
and they may even yell at you. And
some clinicians have much discomfort around that. And
they're not yelling at you. They're yelling with
the generations of past that are showing up
with them as I discussed before. So as
a clinician, you have to be strong enough
to recognize that this is their
venting, move forward. And then once you get
to the next appointment and you start talking
about, you know, where are we with your
levels, what is the plan, here are the
risks, here are the benefits. But the the
really monumental piece for me is the patients
who
actually it it's changed the very fiber of
who they are, which sounds very grandiose.
But I've had patients where when you get
them fully recovered and they've, for the first
time, stepped out of iron deficiency anemia for
the first time in twenty years and they
remember who they are,
it's a phenomenal experience to walk that path
with them because they've forgotten
what it felt like to be
normal.
And I don't think that's anything that you
can really describe to someone. You have to
see it for yourself. But seeing those moments
where finally with treatment and removal of iron
deficiency, which causes so many issues for so
many of these
women that expands beyond what you think it
would, it changes it can change their whole
personality. And it's an interesting
it's an interesting concept to know that perhaps
we don't even know these women because we
haven't provided them the tools to show up
as themselves.
Yeah. And I'm sure those moments are kind
of what help you get out of bed
some mornings.
Yes. Absolutely. Because there are still the barriers
and the other things that, we have to,
overcome. And so those are the the moments
where you're like, okay. This is this is
possible, and every person deserves this opportunity
to experience the same thing. Absolutely. I guess
as we wrap up, what what's your message
of of hope right now in in the
bleeding disorder space, especially for women and girls?
Yeah. I think we are well positioned
at this time period to really get to
a point where we're making real progress and
not just having PR conversations
about women with bleeding disorders, you know, being
in vogue. I know some programs have existed
for fifteen or twenty years, but really haven't
moved the needle. So I do feel like
now we are in that position to really
get that moving forward, and it is my
hope that women have not lost hope and
can also
drive that change right along with everything else.
So I am more hopeful than I have
been in the past with the caveat that
I recognize that challenges still exist. Thank you
so much for being here today on what
I assume is a lunch break. So I
hope that you can
go back,
to to lunch before you you have finished
the rest of your day. And thank you
again so much for being here, Doctor. Amber
Federizo. Thank you for having me. Of course.
This has been Boundless Bee, the Hemophilia B
Podcast, the podcast standing with you from a
family like yours presented by the Coalition for
Hemophilia B and in partnership with Balancing Life's
Issues.
To learn more about how to advocate for
yourself or someone you love and to stay
connected to your community, visit hemob.org.
Thank you for listening 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. Produced by me, Kai. Got
an idea for the show? Send us an
email at podcast@hemob.org,
and don't forget to stay connected to your
community at hemo b dot org. Anything else
to add, Miles?