Name : Susan Pedersen
E-mail : susanp@mail.dk
Adult: 33 years old
Location: Skive, Denmark
Area(s) affected: Left foot, tibia, knee and hip. Suspect: left arm and hand.
Personal History:
I was diagnosed in 1986 (age 13). Several operations (7), trying to lighten the pain, by correction of the deformed bone, with some luck. A lot of x-rays showed that there was something wrong. Tibia was deformed and they could see "the melted candle wax."
The orthopaedic surgeon started looking for similar cases, and found Melorheostosis. At the same time he could tell me that I probably was the only one in Denmark.
First it was in my left ankle, then left tibia, then knee and now I have pain in my thigh and hip. New x-rays showed that it was there too (deformatation and melted candle wax). I have an appointment with the same surgeon who I started with in 1986. Lucky for me, for no one else will have anything to do with it.
I do not take any medication for my pain, though I have pains every day. I think I have learned to live with them, so far. Through the last few years it has become worse, so maybe later I will have to.
It has been good to read abort other people who have the same disease. I have had a lot of questions through the years.