Name :   Helen Johansson

E-mail :

Adult:    40 years old

Location:  Karlskrona, Sweden

Areas affected:  Right hip and femur

Personal History:

Hi!  I'm Helen.  I was diagnosed with Melorheostosis in January, 2006. I went to the doctor in November 2005, since I have had a pain in my hip for several years.  He examined me and sent me to have some x-rays.  After that I was contacted by the chief of our orthopedic nursing ward at our hospital by a letter.  More x-rays followed.  He said he had never seen anything like it, and that he had contacted colleagues at Lunds University Hospital. They confirmed it was Melorheostosis. Now my doctor, Peter Munksgaard, wants to replace my hip joint.  I'm having more x-rays to come in 6 months, to see how progressive it is.  The good thing about it, it's not mortal... 

A funny thing about it all, I knew more about this disease than my doctor. As soon as I knew the name of the disease I started to search for information about it on the internet.  I found this page, among little else, and think this is the most serious site that covers our disease...

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