Client Spotlight: Meet John S.

By Gelene Doolittle, RN, Outreach Nurse

John is diagnosed with vWd2. As a child he knew something was wrong but there was no treatment except to suffer through a bleed. His mother would soak rags in apple cider vinegar to try and cool down the “fever” in his joints. He had his first bleed in 1959. He also had two siblings who had bleeding disorders. One brother lost the use of his legs after a fall from a tree.  Another almost died from having teeth pulled.  At this earlier time it was hard to find medical care anywhere in Georgia since most doctors would not treat a person with a bleeding disorder.

John developed arthritis by 1962 and by his teenage years had stiff knees, shoulders, elbows, hands and back. In 1974 his life became a bit better when he became one of the first people in South Georgia to get factor. He remembers being in a hospital room with many staff members observing him getting this new medicine. In 1984 when he had a back bleed he was given cryoprecipitate since people who were getting factor were also getting HIV. He had five cousins die from this new virus. The cryo helped his bleeds but unfortunately he acquired hepatitis B and C although he remained HIV negative. 

John believes some good can come from every bad situation as recombinant factors were developed.  A new life was opened and although he had to have both knees replaced and both ankles fused, due to not having treatment earlier, these surgeries prevented progression of his joint problems. In 1995 he began prophylaxis. His hepatitis B was eliminated with treatment and his hepatitis C became undetectable when treated. Now he tells the younger generation that to simply be able to walk and run is a gift to be appreciated. He urges them to infuse their factor and treat bleeds right away. He says by doing this you can have a much better quality of life than others before you.