Page 8 - BloodBrothers
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Even though I didn’t choose to live with hemo- feelings for that special someone, but be unsure
philia, I have chosen to be close to my bleed- about when in the relationship to tell them about
ing disorder community of “Blood Brothers”and his bleeding disorder. He wonders about what sort
“Blood Sisters.” Bleeding disorders know no gen- of career might prove a good fit or whether to go
der, nationality, ethnicity, or socio-economic class, on disability, and, if so, how to live on disability.
and neither should we. This book’s focus is on the He knows what it feels like to wonder if he is strong
Hemophilia Federation of America’s (HFA) Blood enough to overcome his challenges and provide
Brotherhood program and the special relation- for his family. He’s been in the position of hav-
ship between Brothers. (This is not intended to ing to explain hemophilia to a teacher, coach, or
disregard the challenges and struggles our Blood medical professional. He understands why some
Sisters face. That will be another book!) I have of us didn’t prepare for retirement age because we
said many times, “We may not have known each didn’t expect to live that long. A Blood Brother
other from Adam ten minutes ago, but know we is also the one who can call me out if I pull the
are family because of our common bond.” “Hemo Card”—when I let my hardships get the
better of me and I’m ready to give up. Sure, Blood
Having Blood Brothers has meant so much to me Brothers can go for long periods of time without
throughout my life. A Blood Brother knows what connecting, but it makes no difference because we
a bleed feels like and how you know when one can all pick right up where we left off.
has started. He knows the feeling of not want-
ing to infuse. Who knows why we sometimes act The HFA Blood Brotherhood concept started from
like DABs, or “dumb-ass bleeders?” Why do we at two Blood Brothers talking about how strong this
times say to ourselves, “I think I’ll wait and see if bond was between us, but there was no outlet
it really is a bleed; then I’ll do a dose”? A Brother or structure to facilitate that connection. As the
can relate to weighing the fun or risk against the desire to reach out and spend time with our
pain, or when we say, “I’ll be okay. I’ll just ‘pro- Brothers became stronger, we thought it would
phy’ tomorrow.” A Blood Brother knows the fear of be great if HFA, our consumer-centric nation-
dying early from a bleed, HIV, HCV, or some- al organization, could create a way for us to
thing else. He knows what it’s like to have strong connect. Susan Swindle, then HFA Executive
Sure, Blood Brothers can go for long periods of time
without connecting, but it makes no difference because
we can all pick right up where we left off.
8 HEMOPHILIA FEDERATION OF AMERICA
