Support Groups

I am Simon and my story with classical-like Ehlers-Danlos syndrome  started from birth. I have always struggled with bowel problems, and I could not walk far or even sit down without my knee caps popping out of place. At the time my doctors and physiotherapist did not know what was wrong with me. I  spent time in Great Ormond Street Hospital having tests done to see what the problem was and I was diagnosed in my early teens. For me, this was great because it meant I could work on the problems and try and fix them. At school, I knew I wanted to become a pilot but was told because I have learning difficulties and EDS, that this would be impossible. When I left school I swam a lot to get my aviation medical along with my pilot’s license. I want people to believe that they can still achieve their dreams. I would really like to help teenagers with EDS and show them my story and that there is a life with EDS if you can find management. Email: mensgroup@volunteer.ehlers-danlos.org

Members of EDS UK are welcome to join our men’s closed members group on Facebook. Visit us here to join.

‘I’m fine’ is the name of the mens online support group which meets across the year on the Zoom platform as well as through the ‘Men only’ Facebook group