Our Speaker Today: Debbie Adamkin

Executive Director, Florida Hemophilia Foundation

Debbie Adamkin’s son has hemophilia. Ten proteins are needed for blood to clot properly. People with Hemophilia A need Factor 8 and Hemophilia B needs Factor 9. The cost of medication for a patient suffering from hemophilia can range from $200,000 to $1,000,000 per year.

Please participate in the walkathon fundraiser that will be held at Jungle Island on March 5^th. You can learn more and make a contribution by going to www.hemophilia.org/walk.

Fast Facts about Hemophilia

The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).

About Bleeding Disorders
Hemophilia is a genetic bleeding disorder that prevents the blood from clotting normally. The main symptom is uncontrolled, often spontaneous bleeding. Internal bleeding into the joints can result in pain, swelling and, if left untreated, can cause permanent damage

Hemophilia results from the deficiency of one more  proteins known as  blood clotting factors. There are 13 clotting proteins in the body, all of which contribute to the formation of a clot. The two main forms are hemophilia A (factor VIII deficiency) and hemophilia B (factor IX deficiency). Hemophilia occurs in 1 in 5,000 live male births, of these 80% are hemophilia A and 20% are hemophilia B. The worldwide incidence of hemophilia is estimated at more than 400,000 people. Approximately 70% of people around the world do not have access to treatment.

• Currently, there is no cure for hemophilia. While treatment exists, it is costly and may require lifelong infusion of replacement clotting factor that is manufactured either from human plasma or using recombinant technology. Hemophilia occurs predominately in males. Women are carriers of the defective gene and may experience mild symptoms. In about one-third of cases there is no known family history of hemophilia. Instead, the disorder results from a spontaneous genetic mutation.
• Nearly 90% of Americans with severe hemophilia became infected with HIV  in the 1980s when the nation’s blood supply was contaminated  by blood pooled from people infected by HIV/AIDS. More than 50% of people with hemophilia infected with HIV have died. Since 1986, there have been no reported cases of HIV transmission through factor concentrates in the U.S. Current donor screening measures and improved viral inactivation methods have been integrated into the manufacturing process to dramatically improve the safety of these plasma-derived products.