I have Ehlers-danlos-syndrome.
A disease of the connective tissue.
You know those bendy kids at school who you call double jointed? They probably have it too.
But it doesn't just effect joints, although those are very painful and damaged. It can effect all connective tissue.
I haven't posted lately because I could hardly even stand. This has been me for about 3 months.
I have a tear in my dura. It's the tissue that holds the spinal fluid. I'm in hospital and am hoping to have it repaired soon.
This week is leak week.
Share this video with anyone you know that has a headache that improves when they lying down and worsens when upright.
It features Dr Carroll of Standford university describing this debilitating, often misdiagnosed but very treatable condition.
http://spinalcsfleak.org/leak-week-2017/
It is also rare disease awareness day. The perfect day to start these conversations and help bring isolated illnesses into the light.
https://m.facebook.com/Zebra-Dreadlocks-and-a-Braveheart-1070022743144516/?ref=bookmarks
Thinking of you and wishing you a gentle recovery.
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Hope everything goes well for you with the repair
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Cheers Boom King
👍
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Here's to you getting better and thank you for bringing the headache symptom to my attention. I don't know anyone this applies to but if I ever hear of it, I'll be glad to help in case they don't know.
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