I would love to hear if anyone has any updates of treatment for MED and also how are you managing the pain, which medications are being used and are they successful?

I am 20 years old and am having two hip replacements at moment to stop the pain and help me walk. Having lived with the pain all my life I cope well with painkillers like Ibroprofen and luckily havnt had to have stronger ones!

I have just read your post. I am James mum! We struggled to find out what was wrong with James as MED is so rare! His symptoms are short stature, small stubby hands and feet and pain when trying to walk mainly in hips. We firstly were with Gt Ormond Street and then the Royal Orthopedic Hospital in Stanmore UK. We then found a great surgeon locally who has just done the first of two hip replacements.. What are your daughters symptoms ? Would be lovely to hear from you have been so alone on this journey. Beverly