Blood Disorder - @istrive2thrive

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“I never knew what a “normal” childhood looked like. I spent half of my life in the hospital, in and out of Ronald McDonald Houses for terminally ill children, and survived a near death experience. I was born a hemophiliac, which is a clotting disorder that affects predominantly males, but can be present in females as well. There are three levels of hemophilia ranging from mild, moderate and severe, which is determined by a simple blood test to evaluate the level of clotting factor in the blood stream. I’m a severe hemophiliac type A, with less than 1% of factor VIII. There are multiple clotting factors in the blood stream, but factor VIII is the glue than binds many of the factors together than form a clot. To treat my hemophilia, I must infuse directly into the vein 2-3 times weekly synthetically derived factor VIII proteins to help my blood clots. In the late 70’s and early 80’s, this product to treat hemophilia came directly from human blood donors. This is when the AIDS crisis and the hemophilia community collided, and news flooded the headlines of the epidemic that would wipe out a vast majority of hemophiliacs from that era. News media and talk shows hosted hemophiliacs like Ricky Ray and Ryan White, who were the first public advocates for hemophiliacs infected with the HIV virus. Both Ricky (15) and Ryan (19) succumbed to AIDS. At age 3 I became co-infected with both HIV and Hepatitis C. What was to save my life, in turn, almost ended it. Over 10,000 from the bleeding disorder community were affected in the USA alone. 50% of the hemophilia community worldwide were affected. Less than 5% in the USA are alive today. I am the 5%. Today, I’m cured of Hepatitis C, HIV is undetected and hemophilia managed by a simple weekly injection. I don’t have to search the world over for signs, wonders or miracles… The fact is, I already am one. I proudly wear this A.W.A.R.E. necklace as a reminder of the road I’ve traveled, and that I’m carrying the torch for those we lost from the hemophilia pharmaceutical holocaust of the 80’s. My name is Joseph Burke, and I’m A.W.A.R.E.” @istrive2thrive

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