World Hemophilia Day 2018

2018-04-17

One of the most memorable hemophiliacs I ever knew of was Ryan White. While I didn't really immerse myself into the problems associated with persons with AIDS I did follow the developments as well as I could. I thought his story to be particularly poignant given the treatment he was given by his community and the general failure to even attempt to understand the nature of disease instead of persecuting the victim of it.

Ryan White was a teenager from Kokomo, Indiana who suffered intense stigmatization and discrimination after an AIDS diagnosis which was the documented result of a blood transfusion.

That cruelty which is ignorance knows no bounds and his efforts fighting the foes of his community catapulted him to the status of national poster child for HIV and AIDS as the result of not being readmitted to school following his diagnosis. He was infected with HIV from a contaminated blood treatment called factor VIII.

That notoriety of his public and personal plight attracted a number of stars who rallied around him and his cause. The tragedy of his illness culminated with his death on April 8, 1990 — which ironically was but a month prior to that

high school graduation he pursued with everything he had left.

Congress subsequently honored his memory by passing legislation bearing his name in August of 1990 called the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

World Hemophilia Day is an international observance held annually on April 17 by the World Federation of Hemophilia. It is an awareness day for hemophilia and other bleeding disorders, which also serves to raise funds and attract volunteers for the WFH. It was started in 1989; by one Frank Schnabel with April 17 being chosen in honor of the anniversary of his birth.