Jonathan Hill, a patient with hemophilia A, talks about the many challenges faced by the hemophilia community during the last part of the twentieth century.
Hemophilia A is a genetic disorder caused by missing or defective clotting protein, factor VIII. Symptoms are dependent on the level of factor VIII present but in more severe cases, excessive bleeding can lead to severe pain, especially at joints.
Currently, most hemophilia A patients take a recombinant factor VIII product to control bleeding and numerous products are available, each with its own set of benefits and challenges. However, in the 1970s, 1980s, and part of the 1990s, the standard of care was receiving freeze-dried concentrates of factor VIII from pooled blood donations. Unfortunately, that blood was occasionally tainted with viruses, such as HIV and hepatitis C.
As Jonathan notes in this video, having those extra concerns and/or infections led to many physical and emotional problems. Jonathan eventually had to have a liver transplant as a result of hepatitis C.
Jonathan shared some of his life story in the graphic novel, Blood of the Paladin.
To learn more about hemophilia A and other bleeding disorders, visit checkrare.com/diseases/hematologic-disorders/