Page 8 - HFA_Dateline_2017_Q2_Summer

Storytelling for Advocacy

By Sarah Shinkman, Staff

Every day, we share stories with friends, family, teachers, peers, doctors, and others both in-person and online. Stories can
inspire, excite or frustrate us, and they can influence our own decision-making. Through storytelling, we have the power to
advocate for a better understanding of bleeding disorders and access to care.

Alexandra, a young woman with von Willebrand Disease (vWD), shares the story of when she was diagnosed and how she has
learned to live her life to the fullest, while managing her disorder. Alexandra is an advocate for herself, her family, people with
vWD, and community members worldwide.

Like Alexandra, we all have stories to tell about how bleeding disorders affect our lives. Your experience is your expertise.
What is your story? Tell HFA, and your piece may be shared in a future issue of Dateline: advocacy@hemophiliafed.org.

By Alexandra M. Abreu Boria Alexandra at Columbia University, where she will
begin her Master’s in Social Work in international
“You have a bleeding disorder.” I still remember the small white room at Al- welfare and social policy this fall.
bany Medical Center where my sister and I were both diagnosed with von
Willebrand Disease (vWD). I was 12 at the time, three years older than my
sister. At that young age, I was already experiencing many difficult transi-
tions in my life. I had recently moved to New York from Puerto Rico. I was
learning a new language, attending a new school, adjusting to the American
lifestyle, and to add to the load, the doctors discovered I had a bleeding disor-
der. Many things were going through my head but I didn’t quite understand
what was happening. Prior to my diagnosis, I didn’t know what bleeding dis-
orders were. What I was sure about, however, was that having a bleeding dis-
order could not be a normal thing. As a result, I thought the absolute worst
and began to cry.

Thankfully, my mom was in the room with my sister and me when we re-
ceived the news. I have always looked up to my mom. When I feel scared or
upset, the first thing I do is go to her for reassurance. Unfortunately, it was
a difficult time for her as well. My mom had brought us to the doctor for a
regular checkup; none of us were prepared for this type of diagnosis. Any
parent would have a hard time processing this news. I remember the look
of worry and upset on my mom’s face as she tried to keep it together and be
strong for us.

Could I live a normal life? Were there any treatments? Could I play sports?
Could I go away to college? These were all important questions and I imme-
diately peppered my doctor for answers. However, just like I remember that
initial frightening moment at Albany Medical Center, I also remember how
relieved I was when they told me that everything was going to be okay.

And yes, they were right; everything turned out to be okay. I played sports in
high school and college; I was not limited to stay home for college; and more
importantly, I am healthy and live a normal life. I would be lying if I said
that having vWD didn’t change my life, because it did. My life became more
meaningful when I realized that I had something that makes me exceptional.
vWD is more than a bleeding disorder to me: it represents my strength and
my ability to handle whatever life throws at me. n n

8 Dateline Federation | Fall 2017