Surviving a rare disease gives chaplain a unique outlook on life

In this week’s Patient Files, pastor Stephen Weisser talks about beating the odds to survive a rare chronic disease. 

Last year, when pastor Stephen Weisser was going through treatment for Hepatitis C, he spent a lot of sleepless nights coping with unpleasant side effects.  He also started writing stories at night about his memories of being hospitalized for long stretches of time as a child and growing up dealing with the rare disease hemophilia.

“I stared to realize I was writing about the struggle with death, as a kid,” he said. “I remembered myself as a kid and the way that I tackled the disease as a child.”

Weisser’s blood does not contain clotting factors – the substance in human plasma that causes coagulation or clotting.  Untreated, a bruise or even a muscle tear could be life threatening.  

Hemophilia is a genetic disease carried by females and passed down to males. Weisser’s maternal grandfather was a hemophiliac and died of a stroke (a brain hemorrhage) at age 40.  His mother never knew that she carried the disease because the illness was not discussed in the family.

At age 52, Weisser has exceed the age of many hemophiliacs of his generation. He’s been close to death many times from internal bleeding.  He survived hepatitis and a stroke.  He managed to avoid HIV infection through too many blood transfusions to count – an almost miraculous feat for a hemophiliac who came up during the 1980s when the blood supply was compromised.  Weisser says of the those days, “they didn’t talk about what they would do if you got HIV, but how they would treat it when you got it.”

In his lifetime, Weisser has seen a revolution in the treatment of the disease.  

“When I was born, the age expectancy of life was maybe 37 years,” he said. As a child the only treatment available to him was whole blood transfusions, the same treatment that was available to his grandfather. It required a trip to the hospital and the risk of infected blood. Today, Weisser carries a clotting factor replacement with him and can often inject and infuse the drugs himself as needed.

“I sort of see the healing that I longed for when I was a kid,” he said. “And I consider myself really lucky to see that.” 

Weisser plans to shape the writing he began last year into a memoir, or fictionalized account, of his life.