Anyone heard of Trevor's Diesease? (Dysplasia Epiphysealis Hemimelica)

[MissDollyMix]

Just that really. My teenager has recently been diagnosed with Trevor's Disease and apparently it's super rare so I'm not really expecting anyone to reply! But we're now planning surgery for DC to try and alleviate some of the joint issues - the ankle is particularly badly affected. I was hoping someone out there might have been through this before and have some words of wisdom or shared experience!

Not Trevor’s disease.

But as a teen my ds was also diagnosed with a rare genetic condition affecting his mobility so I understand that lonely feeling.

I’ve found closed groups on SM really helpful so I’d have a scour around there if you use it.

I hope surgery is successful and improves his quality of life.