My Mother’s Struggle with Scleroderma

Reading about Mary Flannery O’Connor and her father, Edward, makes me consider my own family’s experience with autoimmune disease.

Autoimmune diseases both interest and terrify me. My own mother, Sylvia, suffered with a disease similar to lupus called systemic scleroderma. She died from its effects when she was 43 – about eight years after scleroderma’s symptoms started to show. I’m grateful that I did not inherit this disease and, that so far, neither has my biological brother nor have his children.

Here’s what’s strange about my mother’s illness. Systemic scleroderma is consistently described as a rare disease and yet my mom was born and grew up in a northern Alberta village with a population of 70 people. Three residents of that area were diagnosed with this illness at the same time Mom was.

It seems that these autoimmune diseases like lupus and scleroderma can be inherited, but it also seems that some environmental factors may determine whether or not the illnesses take root and how severe their symptoms. In the case of my mom and the O’Connors, these diseases proved to be fatal.

I remember that my maternal great grandfather’s first wife died young from an undiagnosed disease. All anyone ever said about it is that it was like multiple sclerosis. Of course this leads me to assume that there’s a predisposition to autoimmune diseases on my mom’s side of the family.

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My mom, Sylvia Knutson, on her wedding day in 1964.