For Barbara, SisSLE is a way to participate more fully in her sister’s illness, which she was too young to understand while growing up. “I remember watching her; she’s very strong, she always got through everything,” she says.
The sisters know they are good subjects; lupus and its autoimmune cousins are common throughout their family. In addition to the great-grandmother and aunts, another sister has antiphospholipid antibodies and has had two miscarriages, although she has not been diagnosed with antiphospholipid syndrome. In addition, their mother and another sister tested positive for antinuclear antibodies (ANAs), although the levels aren’t high enough for a diagnosis.
As for Bridget, she’s not bitter about her disease. “I always think things happen for a reason,” she says. “I said to my sisters, ‘I will get better and write a book someday,’ which I’m working on now. I just didn’t think it would take so long.”
Debra Gordon is a medical journalist based in Virginia.
