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What you can’t see about my life with Ehlers-Danlos Syndrome


I don’t remember everything about my diagnosis of Ehlers-Danlos syndrome (EDS) as I was young. I remember multiple dislocations. I remember how happy I was to go to the doctors in my brand new navy blue flowery clogs, only to be told I couldn’t wear backless shoes anymore. I remember being told that it was dangerous to ride a bicycle, but that is about it.

From diagnosis in primary school until I was at university, my condition didn’t really affect me. I had dislocations every now and again, I fell over a lot, I had issues remembering and staying awake. But as this is a condition I grew up with, these seemed more like personality traits than symptoms from an underlying condition.

In my early 20s the pain from EDS got worse and my life changed forever.

When thinking about things you cannot see when someone is living with EDS I have quite a few.