PHOTO ESSAY: One woman’s journey with lupus, the disease of 1,000 faces
Ruth Wilson doesn’t look sick yet: “she hurts everywhere, all the time” – because her immune system is attacking her own body.
This Massachusetts woman suffers from lupus, nicknamed the disease of 1,000 faces because of the variety of its symptoms – one of several autoimmune diseases that affect tens of millions of people and constitute a great medical mystery. Today, researchers are decoding the biology of these debilitating diseases in hopes of eventually treating the causes, not just the symptoms.
Wilson’s journey offers a glimpse of the burden.
It took six years of symptoms – fever, rash, pain, swelling and, ultimately, the onset of kidney failure – for the diagnosis to be made. More than a decade later, Wilson relies on a handful of pills each morning and monthly IV therapy to alleviate — not eliminate — an often invisible chronic illness.
“You look normal. People see you and don’t think you have this horrible disease,” said Wilson, of Littleton, Massachusetts. Sometimes healthy people “pretend to be sick so they don’t have to go to work. We pretend to be healthy so we can keep doing the things we want to do.”
His daily pain, fatigue, and brain fog wax and wane. The “flare-ups” are worse: the symptoms worsen suddenly and markedly. For Wilson, they lead to sudden high fevers, legs too swollen to walk, more intense pain. They impact her work in a medical laboratory and the time she spends with her husband, teenage son and college-aged daughter.
Wilson has learned that too much sun is one of his triggers. So a family visit to the beach means lots of sunscreen, a big hat and long sleeves.
Every time a flare-up occurs, Wilson pricks his finger to take a blood sample. This is part of a study being conducted by the Lupus Research Alliance to better understand variations in the disease.
She balances it…
