Name :    Robin Britti

E-mail :

Adult:     37 years old

Location:  Hagerstown, Maryland

Area(s) affected:  Right femur; right knee

Personal History:

I was just diagnosed yesterday with melorheostosis. My right femur is affected and I also have developed a soft tissue mass on the inside of my right knee. I'm still a little bewildered by it all.

Symptoms: I was born with a "pork rhine" discoloration on my right knee and back of calf and pain.

My orthopedic doctor told me yesterday that was a sure sign that I may have this disease.  However, I was just diagnosed yesterday.  He said I was very lucky the symptoms really didn't take hold until my 30's.  I have always had a "weak" right leg, however the pain didn't start until in my 30s.

Sometimes I hurt so bad I just sit and cry if something even brushes my leg and then some days I'm perfectly fine. I found that really odd, until yesterday, when I found out it was normal. I am being sent to a bone tumor specialist at Johns Hopkins University in Baltimore to see if there are any new treatments available. However, I was told not to get my hopes up. My main course of defense is going to be pain management. He told me pain would be a part of my life forever (which, considering the alternative, I guess that's ok).

Feel free to send me emails. I don't know anyone I can really talk to that has this condition because we are all "one in a million."



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