Name :  Julie Williams

E-mail : 

Adult:  33 years old

Location:  Franklin, PA

Areas of body affected:  Right hip, femur and knee

Personal history:

My name is Julie Williams. I am 33 years old and I'm from Franklin, Pennsylvania. I was diagnosed with Melorheostosis in my right hip, femur and knee in 2003. 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. After going through several x-rays, bone scans and blood work, I still do not know what exactly can be done about my pain.  I have severe swelling on my knee, so bad that I can not bend my knee.  My one doctor also informed me that I have a tumor on the side of my knee but mentioned nothing about removing it. 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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