Page 9 - BloodBrothers

Director, heard the request and IT MAKES SUCH more than many of us could

submitted a grant proposal to A PROFOUND ever imagine. From childhood
the Centers for Disease Control on, many have suffered bully-

(CDC). Much to our surprise, DIFFERENCE ing, ostracization and rejection.
the grant was approved, and we All have had to get educated on
had a way for Blood Brothers when you can speak their disorders and new treat-
around the country to meet in to someone who has ment protocols, and learn to

person and online. Some meet- walked ten miles navigate the healthcare system.

ings were held at HFA’s national in your shoes. They have had to learn to infuse
annual symposium and some and advocate for themselves,

at local member organizations. their loved ones, and their com-

These meetings offered educational sessions and munities for better medical care and support. I

fun activities, but more importantly, they offered am so grateful to be part of this community, and

time for us to connect to one another about press- I hope you will be inspired by the stories of my

ing issues as well as past concerns. It makes such Blood Brothers. As this book was being written,

a profound difference when you can speak to our brother, John Reed, whose story is included,

someone who has walked ten miles in your shoes. passed away on October 15, 2016 from complica-

This book honors 15 Blood Brothers by telling tions related to a recent ankle replacement. John
their stories. Together we share their experi- felt that hemophilia and all of the struggles he
ences, struggles, and challenges as they’ve per- overcame throughout his life actually made him
severed through often dire times in their lives, a better person, helping him keep his life and
enduring countless bleeds and treatments, and relationships in perspective. This book is dedi-
losing friends and loved ones along the way. cated to all of the Blood Brothers who have gone
Some of them experienced the “Dark Ages” of before us and to those still living who have
hemophilia treatment and the consequences of inspired us to find our own voices and advocate!

having tainted blood infused into them, and Life is full of choices. What will you choose? You

others were more fortunate. Some have gone to could decide to not be involved with your Blood

Hemophilia Camp while others never had the Brothers, or you could discover the great expanse

opportunity to go. Some are from the US and of understanding and support that comes from

some are from other countries. Some have found connecting with others in the HFA Blood Brother-

love and had families, while others still hope hood. If you give it a try, I guarantee you won’t

to. Some live circumspectly and others are more regret it. S

daring. Regardless, all of them have a strong will And a bit of advice:
to survive and find their purpose in life. Despite don’t choose to be a “DAB!”
their challenges, they have all overcome so much

BLOOD BROTHERHOOD 9