Tuesday, May 11, 2010

Ehlers Danlos Syndrome Awareness Month

May is Ehlers Danlos Syndrome awareness month 

16 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.


Achelois said...

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)

steph said...

I didn't realise that there is such a thing as an EDS awareness month.

Well done for highlighting it!

BenefitScroungingScum said...

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!

Ellie said...

watching that just made me want to cry :o(

Fire Byrd said...

What can anyone say here. Thanks for putting it up.