It’s a mystery disease. Patients get sick fast, and often their doctors don’t know why. About 50,000 people in the United States have been diagnosed with this condition. But it often takes years to find the correct diagnosis, and doctors worry many more could still be suffering.
Dina DePriest spends a lot of her time getting checkups these days. It’s better than four years ago when a different doctor wouldn’t take her terrible arm pain seriously.
“He accused me of holding my eight-week-old baby too much.” Dina said.
She also developed a rash. In all she went to five doctors as she kept getting worse.
“I was covered with the rash from head to toe, and by this time I was confined to one level in the house. I couldn’t even get down on the floor to play with the baby,” she says.
Frustrated, this ICU nurse began researching online. W she found dermatomyositis, the symptoms matched up.
“I was in tears. I was horrified.”
The disease is diagnosed in just one in 100,000 people a year. Doctors think more patients remain unidentified.
Andrew Mammen, M.D., Ph.D., a neurologist at Johns Hopkins Hospital in Baltimore, Md., says symptoms include weakness and sometimes a terrible rash.
“When it starts, it’s usually fairly mild. People can progress to being completely wheelchair-bound, unable to get out of bed.” Dr. Mammen said.
With myositis, normal muscle is attacked by white blood cells. One theory is the cells mistake muscle for cancer. This might be linked to the high rate of cancer among patients.
As for Dina, she’s stronger after treatment, but still has a slight rash and tires easily.
“They got me up, walking around and running again, so as long as I can stay that way, I’ll be happy.”
Because, now, even little steps are a big improvement.
Myositis affects more women than men, although it’s not known why. Steroids are the typical treatment, and they can greatly improve a patient’s life. There is no cure for this disease.
If you would like more information, please contact:
Johns Hopkins Myositis Center
Johns Hopkins School of Medicine
(410) 550-6962