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Post by David Leggett on Nov 2, 2009 12:47:58 GMT -5
IF YOU ARE PLANNING SURGERY PLEASE CONTACT US IMMEDIATELY Samples of tissue, such as bone, skin or soft tissue, from your surgery are urgently needed for research. It is important that arrangements be made as far in advance as possible. There is no cost to you or your doctor. You can make a valuable contribution to the search for treatments and a cure. For questions or information email: Kathleen@melorheostosis.org.
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Post by mark67 on Jan 20, 2010 21:01:41 GMT -5
ive had some elbow surgery and the bone was sent off for research, i suffer with Melo. there was an idea from the surgeon that if it progresses as it is then maybe they will put a new elbow in, first ive heard that bone with Melo are not good as they deform, i have had contact with a Proffessor Wordsworth who is the leading figure in Melo research at Oxford, england. he said it wasnt a good idea when i had the first op, which was only keyhole, ive had that surgery and the proffessor was right. i dont know what to do and were to turn, am losing the use of my right arm through this desease, am just worryed about the future
best wishes
mark m
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