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Add Your Personal History


One of the most powerful tools of this website is the sharing of information among melorheostosis patients.    Please remember that how you tell your story doesn’t matter at all; what is important is that we share our stories with each other. 


To have your information posted to this site in the “Personal Histories of Melorheostosis Patients” section, please send us the following information by email to personalhistory@melorheostosis.org.




Name of patient 


Email address (optional)


Child or Adult


Parent’s name if reporting for child


Age (optional)


City and state, or city and country


Area(s) of body affected


Personal History:  Your personal history with melorheostosis – please be as detailed as possible including as much of the following as possible:  symptoms, when and how diagnosed, all treatments tried and the results, any surgeries and the results, medications tried and the results, doctors consulted, and your current status.







If you have any problems or questions, please don’t hesitate to email us at Kathleen@melorheostosis.org