— by Barbara DeWitt
Coping with lupus is a full-time job for many of us. But you can make it an opportunity to get to know your family and create a new type of family tree.
I was diagnosed with SLE while working as a newspaper writer/editor. When I had to retire, I used those skills to pursue the roots of my disease with a vengeance. First, I signed up for all the research programs at UCLA and even got my mom involved. Then I started quizzing cousins at family gatherings, and I must admit they weren’t eager to share their medical information with me at first. Once I explained that health has a history, they started sharing. After all, nobody wants to die of embarrassment.
Over the last 10 years, I have cornered my cousins at family reunions and forced them to talk. I had no idea how rampant autoimmune diseases were in my mother’s side of the family – yet she didn’t have it. In this new family tree, I learned that my great grandfather became crippled with RA and died in his thirties. His brothers back in Germany had similar problems that got passed down to their daughters. Then there was the relative found dead in the garden due to lupus. And in my generation, I have two relatives with leukemia, another with Epstein-Barr, two with fibromyalgia and one (besides me) with lupus.
It may sound depressing to talk about digging up family health secrets, but knowledge is power. It allows you to be your own health advocate while helping researchers help the next generation.
Barbara De Witt is the former fashion editor of the Los Angeles Daily News. She and her husband Don De Witt are co-facilitators of the San Fernando Valley Support Group held the fourth Monday of every month at Sherman Oaks Hospital.