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I'm a 46 year old female that have melorheostosis. It is a rare bone disease. No treatment no cure. It is very painful. Looking for someone els that has this disease that is willing to share information about it and how it's changed your life.
Dear shurrun,
There is a non-profit patient resource organization called the Melorheostosis Association -- http://www.melorheostosis.com/ . We are quite familiar with this patient group, as they are associate members of NORD. It might be very helpful for you to contact them for information and support.
Also, NORD has a report on melorheostosis, but its copyright date is 2006, so it is not entirely up to date. However, it does include some good patient resources and provides a good overview. If you'd like to receive our report, please email me at rn@rarediseases and include your postal mailing address. We'll be happy to send it to you.
Best wishes to you.
Stefanie Putkowski, RN
NORD
Thank you for the Melorheostosis associate web site it was a great help to me.
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