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Anda Cochran worked in the Mecklenburg County mental health system for years and thought she was well informed about health care.
But five years ago, when she was diagnosed with myositis, she had never heard of it.
“I said, ‘What in the world is that?'”
The rare autoimmune disease causes inflammation, weakness and loss of muscles and general fatigue. The cause is unknown.
Thanks to drug treatment, the 62-year-old Charlotte grandmother is feeling better.
She helped persuade the national Myositis Association to bring its annual conference to Charlotte.
From Thursday to Saturday, experts will talk about diagnosing, treating and managing myositis, which affects an estimated 50,000 people in the United States.
Looking back, Cochran thinks she's had the disease since the late 1990s.
It was confused with fibromyalgia, which shares some symptoms. And one doctor thought it was a hip problem that would require replacement surgery one day.
Cochran thought she was getting old, until she realized other people her age didn't have trouble climbing stairs and getting up out of chairs.
A orthopedic specialist performed muscle biopsies and confirmed it was polymyositis, one of several forms of the disease.
At first, doctors prescribed the steroid prednisone along with a series of drugs usually used to treat cancer.
The goal was to reduce her excessive levels of an enzyme called CPK that's released when muscles are damaged.
Treatments made her so ill, she took medical leave in 2005. “I was no longer able to keep that kind of a schedule. Even now there are days I get up, and I think well, this is a pretty much in-the-chair day. It's pretty unpredictable.”
Cochran didn't start feeling better until she began receiving intravenous infusions of immune globulin, a blood product that contains antibodies from the plasma of thousands of blood donors.
This week's conference will feature information about research into new treatments and techniques for managing the illness.
“It is so dramatic, the adaptations we have to make in order to function with the muscle weakness,” Cochran said.
She uses a taller-than-usual toilet so it's easier to rise from a seated position. “I have to be very careful what chairs I sit in. Some of them, I simply cannot get out of alone.”
Cochran uses a cane for balance when she's walking, but she has still fallen many times. “I've been very fortunate not to get injured.”
For excursions to the mall with her daughter, she uses a walker with a seat.
“I can sit while she looks at whatever she wants to look at,” Cochran said. “Even a short trip through part of a mall is exhausting for me. I'm done for the day.
“Things that don't take much of your energy take a lot of my energy.”
