My name is Luca (He/Him) and I’m 36 years old. I received a diagnosis of classical Ehlers-Danlos syndrome (cEDS) at age 24.
For 14 years I have been told that I’m a hypochondriac and ‘exaggerating’. The diagnosis gave me back my dignity, but for several years I managed my health badly, giving up all physical activity and this caused my joints to deteriorate. I also had gastroparesis in 2012, which fortunately resolved. In that period I lost 20kg, coming to weigh 52kg.
In 2014 I realized that I had to change something or I would continue to get worse. I started doing light physical activity in the water, but the symptoms got worse. In 2015 I tried muscle strengthening in the gym and found that it allowed me to feel better. Now I’ve been training for six years and cycling for two years. I have achieved many personal milestones, covering my first 100km in June 2019 and 142km for Rare Disease Day 2020. My longest bike ride has been 180km, so far. Physical activity and physiotherapy allow me to feel better and manage the subluxations I have on a daily basis.
Virtual Support Groups
Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?
Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.