The World Federation of Hemophilia (WFH) chose April 17 as the World Hemophilia Day in honor of WFH founder Frank Schnabel, who was born on that day.
2013 has special significance as it marks 50 years of advancing hemophilia treatment and moving towards a cure.
For more information on World Hemophilia Day, visit: www.wfh.org/whd
Hemophilia featured prominently in European royalty. Queen Victoria passed the mutation through some of her daughters to the royal families of Spain, Germany, and Russia
The Russian royal family turned to Rasputin for a cure when Alexei, the heir apparent to the Russian Empire, suffered from Hemophilia. Rasputin’s magic seemed to cure the boy’s health, but, it was probably because he ordered the boy to stop taking aspirin, an anticoagulant.
The first medical treatment for hemophilia was found in the form of fresh frozen plasma.
After a bleeding episode, patients received plasma infusions which contained only minute traces of coagulation factors. Patients, therefore, required lengthy infusions that placed extreme stress on the cardiovascular system resulting, sometimes, in heart attacks.
Judith Pool\'s landmark discovery provides a simple way to make cryoprecipitates that have higher concentration of clotting factors. This reduced the volume of a typical infusion thereby preventing cardiovascular complications and allowing outpatient treatment for the first time.
Coagulants could now be separated from pooled plasma leading to the availability of accurate dosages of coagulant factors that can be easily stored and carried.
Prophylactic home therapy became possible allowing patients to experience a newfound independence that changed their lives.
The Hemophilia Care Act of 1973 established federally funded hemophilia treatment centers that provide access to multiple specialists such as orthopedists, surgeons and physical therapists.
Hemophiliacs can receive comprehensive care under a single roof, making these treatment centers an integral part of their lives.
Factor concentrates, obtained by pooling plasma from several donors, infected hemophilia patients with blood-borne diseases like HIV and Hepatitis.
Many hemophilia patients succumbed to these diseases and safety concerns loomed large.
Recombinant DNA technology eliminates the use of human plasma improving product safety and dosing convenience.
Preventative (Prophylactic) treatment becomes safe again and quality of life improves for hemophiliacs.
In the last decade, advances in hemophilia treatment have focused on improving recombinant factor therapies as well as exploring gene therapy.
Recombinant therapy aims to achieve a reduction in dosing frequency and elimination of inhibitor antibodies.
Gene therapy promises a cure by genetically altering the body to naturally produce the missing coagulant factors.
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