Ehlers Danlos Syndrome Awareness Month
May is Ehlers Danlos Syndrome awareness month16 year old Damien Wilkins died on 27th September 2009. He had Vascular Ehlers Danlos Syndrome. Damien and his family were fully aware he had Vascular EDS, previously known as EDS type IV but most people with this life threatening condition go undiagnosed until after their deaths. Please take a moment to view the diagnostic criteria for Vascular EDS and the emergency advice from the EDNF.
5 comments:
Thank you for this.
I have one at least of major diagnositic criteria and 12 out of 13 in the minor. Still having hypermobility type (previously k/a type III) as diagnosis is better pyschologically don't ya think.
My heart goes out to anyone with vascular type. (previously k/a type IV)
I didn't realise that there is such a thing as an EDS awareness month.
Well done for highlighting it!
Steph: I think it's run by the EDNF in the USA, but I got the invites on facebook. I did the hypermobility questionnaire last year
Achelois: Definitely!
watching that just made me want to cry :o(
What can anyone say here. Thanks for putting it up.
xx
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