If you want to chat to someone please contact me. My son is 20 now has MED just had first hip replacement... We weren't told about the cast so he hasn't led a normal life unfortunately..

Hello, sorry to hear about your son. I to have the condition and I was diagnosed at the age of 2, because they caught it early they were able to put me in a half body cast which helped me while I was younger. The cast helped with the density of my bones around my joint without putting any pressure on my joints. Doctors have told me that the cast has held off a lot of the pain and symptoms during my youth and I was able to be a "normal" boy. I would search your area for a good doctor who knows about M.E.D or that are willing to learn about it, don't be afraid to speak to a few different doctors until you find the right one. I hope that helps you even a little.

Im pretty sure my 6 year old son has med. His father has it. When he was 2 I had him tested at seattle childrens hospital. they did x-rays and asked about family history. They said he didnt have it. However lately he has been sating his knees and hips hurt, especially after activity or walking. Just yesterday and today he said they hurt when he first woke up. From what i have read symptoms dont present until 6 or 7 years of age. I am just looking for other people affected by this disorder. Also im looking for the best drs and specialists in the nation. And support for him, and also for me.....

Are you still on here? My son just turned 20 and has just had first hip replacement. He is already in a wheelchair for any distances. I don't think you will be stuck in a wheelchair if you have hip replacements so don't get alarmed.

Are you still on here? My son just turned 20 and has just had first hip replacement. He is already in a wheelchair for any distances. I don't think you will be stuck in a wheelchair if you have hip replacements so don't get alarmed.

Are you still on here? My son just turned 20 and has just had first hip replacement. He is already in a wheelchair for any distances. I don't think you will be stuck in a wheelchair if you have hip replacements so don't get alarmed.

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

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 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?