Name: Elizabeth Kelly

Adult:  40 years old

Location:  Reading, Berkshire, UK


Area of body affected:  left knee

Personal history:

My problems started at age 11.  I had my kneecap and cartilage removed at age 15.   Since then I have had 7 further operations  resulting in removal of all cartilage except one little bit left on the outside of my knee joint.  I have also had bone growths removed each time.  During the last surgery in January 2002 a large mass was removed from within and just below my knee. They seem to grow back very quickly and I have to keep having them chiseled out, as my surgeon tells me. My left knee is very deformed and leans inwards which makes walking painful. I also find that as these growths develop, the deformity gets worse and I have also developed arthritis; it is extremely painful all of the time.  

In the hope of finding something helpful, I am due to see a Bone Specialist in Oxford at the beginning of October and due to see my Orthopedic Surgeon again in December. My surgeon is Colin Ferguson at The Royal Berkshire Hospital in Reading, who is fantastic but does not know very much about the disease.


Further to my visit to see a Bone Specialist in Oxford, I undertook a course of drug treatment, which was worth trying but was non-productive, apart from making me extremely ill.  Colin Ferguson decided to send me for a second opinion to a Mr. Steve Cannon at the Royal National Orthopaedic Hospital in Stanmore, which is supposed to be the best Orthopaedic Hospital in the UK.  After seeing him I am now waiting for an operation, in February 05, for a total knee replacement and some bone removal.  Although it is a very difficult operation because of the unknown way this disease seems to behave and the deformity of my leg, he feels that I have no choice but to have it done.  Unfortunately as we all know there is no cure for this disease but he is trying to help me walk without crutches, as my deformity has got much worse and now effects my left hip and spine, and hopefully to get rid of the excruciating pain that never seems to go away.  I will update this page once it has been done and would love to hear from anyone who has undergone such a surgery, even just to give me some hope.

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