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
Back then EDS was not well-known so I had to find old books about it. At school, I never was allowed to do PE because I could not walk or run, but activities I could do and excel in were swimming and bodyboarding. Being in the ocean and the swimming pool was the only time in my life that my body actually felt normal, and I did not have to worry about my knees popping out of place.
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.
After I got my pilot’s license I moved to South Africa and spent a long time out there flying and enjoying life. I am now back in the UK where I now teach on a Boeing simulator. I still spend a lot of time in the sea doing water photography, but my EDS is playing a major factor in my life: I do feel like it’s going downhill again. I can’t walk as far without being in pain, and driving has become very painful, but I am still swimming most days to keep up my fitness and support my mental health. I truly believe that exercise does help with my mental health.
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
I was diagnosed with HSD in 2020 and undergoing further discovery for suspected hEDS. I was exposed to EDS and EDS UK by my partner who was diagnosed with EDS and managed to spot zebra signs in myself. After getting involved with some of the virtual groups during the great lock down of 2020 I wanted to help further support people and when the opportunity arose to assist with the Men’s group co-ordination I jumped at the chance.