Barry is an avid cyclist and advocate for hemophilia
awareness from Houston, Texas, who is living successfully with severe
hemophilia A.
“As a child with hemophilia (in the pre-factor era), I was not
able to be athletic at all. When factor concentrates came along, that
made life a lot better. I used on-demand to treat my bleeding episodes
for years, but as I started getting more and more active, my bleeds
became more frequent. Now that I am on a prophylactic treatment
schedule, it has substantially lowered my ABR.
“Keeping in shape has also helped a lot with my energy level.
Despite all the medical conditions I have to live with, I have been able
to continue to work full-time and fully pursue my hobbies, too. I was
able to take up cycling in a competitive way, which was a lot fun
because I wasn't able to do that as a young person.
“Cycling has always been a symbol of perseverance. When I'm out
on the open roads on my bike, I don't think about having hemophilia. I
feel just like anybody else. I don't let hemophilia define who I am. I
would like to be defined as someone who overcame challenges presented in
life. I feel that with the dosing schedule and the medications that I
have today, I can continue with my passion for cycling competitively.
“For me, the greatest benefits of prophylaxis treatment are that
it has substantially reduced my annual bleed rate and it helps me to
maintain a normal activity level. I think that, without a doubt, this is
a hopeful time for people with hemophilia A. We have therapy options
today that allow people to define their own True Identity.”
“To share your weakness is to make yourself vulnerable; to make yourself vulnerable is to show your strength.”
- Chris Jamy
Never feel shame to share your past to other, it will make you stronger :)
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