adrienne1
08-06-2007, 12:43 AM
Hello,
In 2003, I was misdiagnosed with eosinophilic fasciitis - an inflammation and hardening of the sheathing covering the muscles. Earlier this year, I was finally correctly diagnosed with (a variant of) myositis ossificans - in laymen's terms, muscle turns to bone. I was diagnosed well into adulthood. If my disease had surfaced in childhood, I'd most certainly be in much worse shape. In children, the disease is known as FOP, or fibrodysplasia ossificans progressiva, and the child usually doesn't survive past age 45. I take Vicodin for the pain as well as a low dose of Prednisone (which used to be a much higher dose). This affliction is rare enough to be classified as an orphan disease; only 2,500 cases reported worldwide.
I'm interested in finding others who may have M.O. so we can share stories/fears/concerns and support!
best wishes,
Adrienne
In 2003, I was misdiagnosed with eosinophilic fasciitis - an inflammation and hardening of the sheathing covering the muscles. Earlier this year, I was finally correctly diagnosed with (a variant of) myositis ossificans - in laymen's terms, muscle turns to bone. I was diagnosed well into adulthood. If my disease had surfaced in childhood, I'd most certainly be in much worse shape. In children, the disease is known as FOP, or fibrodysplasia ossificans progressiva, and the child usually doesn't survive past age 45. I take Vicodin for the pain as well as a low dose of Prednisone (which used to be a much higher dose). This affliction is rare enough to be classified as an orphan disease; only 2,500 cases reported worldwide.
I'm interested in finding others who may have M.O. so we can share stories/fears/concerns and support!
best wishes,
Adrienne
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