Diagnosed with Ehlers-Danlos Syndrome
Hi! My name is Nessa Daly, I'm 16 years old and live in Ireland. When I was a few months old my twin sister hurt her arm so my parents brought us to the doctor and asked if it was possible if we had EDS and it turned out we did. I feel very lucky to be diagnosed so early unlike other people as my dad, grandad and some uncles have EDS.
Growing up with Ehlers-Danlos Syndrome
Growing up with EDS wasn't hard when I was a kid, but as a I was finishing primary school things got harder such as writing and sports so I was given assistive technology to help me in school. I felt left out when my friends would play basketball, football, etc. Going into secondary school was also difficult because all day everyday I'd be asked "Why do you need a laptop?" "Why is your skin so weird?" and the constant "Can you show my friend what you can do with your bones?" Though these may seem harmless, they made me feel uncomfortable.
I am proud of haveing Ehlers-Danlos Syndrome
When I was 13-14 years old, I realized that I am gay and having to deal with that and a disability made my life ten times worse. My principal and teachers are wonderful and try to accommodate me as much as they can, which is amazing. I also have great friends who don't care about my EDS, it doesn't matter to them because besides being disabled I am a musician and a photographer. Even though I am still trying to be proud of my EDS and being comfortable with myself, I have great friends and teachers who help and support me. Thank you for listening to me ramble on!