LEAK WEEK

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