Ann Arborite Evelyn Neuhaus

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Neuhaus used a wheelchair throughout her thirty-plus years working as a hospital and health care administrator at U-M and St. Joe's. Now, at age sixty-two, she is doing something even she assumed wasn't possible--working as a filmmaker. "I always had a fantasy about it but never thought that physically I could do it," she says.

Neuhaus has a genetic disease called Gaucher's (go-shayz), most common in Jewish people of eastern and central European descent. An enzyme deficiency causes fatty tissue to accumulate in cells--in Neuhaus's case, her bone marrow and bones. In her late twenties, after repeatedly breaking several major bones, she decided it was easier and safer to navigate life on wheels. She receives an intravenous enzyme replacement therapy that became available in 1991. It can't reverse the bone damage, but slows the disease's progression.

Her mother died of Gaucher's when Neuhaus was seven, but her parents never told their only child that she, too, had the disease. She found out during a routine physical in college. "Looking back, I think my father didn't tell me out of love for me," she says. But she thinks her anger about not being told may have "unconsciously" contributed, during her twenties, to those broken bones. "I just wasn't taking care of myself," she says. "I was being self-destructive."