A Camurati-Engelmann Disease anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Camurati-Engelmann Disease. You're not alone.
I am 46 years old, at the age of 18 I was diagnostic with Myositys, I was on corticosteroids for 9 years and seems like no more pain or weakness since then. About 4 years ago I started to feel bone pain, targeting my long bones and hip and getting worse day by day...
I was diagnosed with CED when i was 16 and im 24 this year. i have pains and always have and i also have muscle weakness and problems with my joints. i cant walk and my thighbones look like bananas. isnt much more to say realy. I just hope someone finds me here