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Rare disease awareness day

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bspittles
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Rare disease awareness day

Post by bspittles »

Today is rare disease awareness day, so I'll post this.



Both my daughters have this condition, both are in almost constant pain and we know that neither of them will ever improve.

Ehlers-Danlos Syndrome (EDS) affects the skin collagen, which covers 95% of the body. All sufferers have different symptoms and suffer to different extents. For Alice (17), one symptom is that painkillers have no effect. For Ruby (3), her speech is badly affected and she communicates mostly through Makaton signing or the speech software on her tablet.

Research is desperately needed, but as with all rare conditions, hard to find funds for.

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Surprised
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Re: Rare disease awareness day

Post by Surprised »

It's not often I'm moved to tears but your post did that.
I really hope your daughters get the cure they need.

bspittles
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Posts: 7607
Joined: 13 Oct 2005, 18:26
Location: In hiding

Re: Rare disease awareness day

Post by bspittles »

https://mobile.twitter.com/Bspittles/st ... 2517455873

Over 2,500 views on Facebook, this is my youngest making her invisible, visible.

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