HME and Hip Dysplasia

I'm 27. I've been struggling with hereditary multiple exostosis (HME) and hip dysplasia since birth. For those who don't know, hme is a rare genetical bone condition where you get abnormal bone growths especially in joints. It restricts my movements pretty bad. And the pain is chronic. I haven't met anyone with my same condition since it's really rare. I was wondering how others manage similar conditions.