Rare Disease Day


I have Ehler’s Danlos Syndrome which falls under the category of rare disease! I have Type 3 and Type 6. This means my muscles are not as strong as normal because I don’t have normal collagen. My skin is very soft and velvet like which makes it easy to bruise and wound.

If I hurt something like twist my ankle, it can takes months or even years to heal. I twisted my ankle breaking all my ligaments five years ago and it still swells up but doctors don’t have any way of fixing the damage.

I can’t do sports even through I would love to learn to ride a horse and even walking in the shopping centre can lead to me feeling exhausted and all I can do when I get home is sleep.

EDS is also an invisible disability so people can’t see that I have it. This can be hard at times because people judge me when I use disability toilets or a ramp at bowling.


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