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ADVOCACY PROFILE
I Know Me Best
A visit to an unfamiliar hospital reminds patient
of the importance of self-advocacy
BY MICHAEL BISHOP, STAFF WRITER
Self-advocacy is the quintessential and necessary skill for accordingly. I quickly learned otherwise — this experience
people with hemophilia. It’s something I’ve been taught was going to be a harsh reminder that I always need to be
my entire life, and it’s something on which Hemophilia able to advocate for myself.
Federation of America frequently focuses its education.
“This experience was going to be a
It’s incredibly important, and I’ve heard story after story
reaffirming its importance. Whether it’s living through harsh reminder that I always need
Emergency Room horror stories, advocating for the right
medication, or enduring difficult hospital stays, every to be able to advocate for myself.”
hemophilia patient has heard about or experienced a need
for self-advocacy. I was so used to treating myself or being around doctors
who knew me very well, that I had forgotten what it was like
I have severe hemophilia B with an inhibitor and anaphylactic for a doctor not to trust my instincts about my hemophilia
allergy to factor IX products, which is a fairly complicated treatment. As soon as I got there, the doctors did not
diagnosis. I also have a healthcare team that I’ve been with
most of my life, who understands me very understand why I was treating with factor
well. A couple years ago I moved two hours VII and not another bypassing agent. When
away from my Hemophilia Treatment Center, I asked what bypassing agent they had in
which wasn’t a problem for me until recently. mind, they mentioned products that had
Although I have severe hemophilia, treat activated factor IX in them. When I once
on-demand, and bleed fairly frequently, I’ve again explained my allergy, they ignored me
been able to manage my hemophilia entirely and began testing my inhibitor levels to see
on my own for many years. I still attend my if they could begin tolerization or treating
annual HTC clinic visits, infuse at home, me with one of the bypassing agents I had
and am able to manage my bleed pain. already told them I couldn’t use.
Unfortunately, 2020 began with a bleed that
landed me in the hospital for the first time in When you’re in the hospital with a bleeding
more than a decade. disorder, it’s not uncommon to receive
regular blood draws for testing. It wasn’t until late into the
I had a terrible knee bleed that I could not control on my own. first night of my stay, when I was getting one of the blood
The pain was too severe, I wasn’t able to do my infusions draws, that I finally asked what that particular blood draw
because of it, and I knew I needed help. I also knew I wasn’t was for. When the nurse told me they were checking my
going to be able to make the two-hour drive to get to my inhibitor levels to see if they could change my treatment,
HTC and its affiliated hospital, so, I went to the closest I was dumbfounded. I asked to speak to the hematologist
hospital with an HTC, hoping the doctors there would be about it the next morning and tried to get some sleep.
able to adequately understand my diagnosis and treat me
10 DATELINE FEDERATION < www.hemophiliafed.org
