Name :      Julie McDanile

E-mail :

Adult:   43 years old  

Location:   Franklin, PA

Area(s) affected:  Right hip down to my right foot

Personal History:

In 2003, when I was 33 years old, I was diagnosed with Melorheostosis in my right hip down to my right foot. I've always had problems with pain and swelling in my right hip and knee but never sought treated for it. I always thought I had fluid on my knee from jogging. When I went to the doctor, I was amazed to find out that I had this rare bone disease. I have gone through several x-rays, bone scans and blood work and 2 knee surgeries. I still do not know what exactly can be done about my pain.  I was referred to a specialist but was told that there really isn't anything they could do for me. I've been living with this pain and everyday it seems to be getting worse. Does anyone have any advice or know of a doctor located in Pennsylvania that I could go and see? I can honestly say that I feel your pain. It's reassuring to know that there is someone else out there that truly understands what I am going through.

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