Vascular Ehlers Danlos Syndrome (vEDS) is a life threatening, life limiting, rare genetic disorder with currently no cure or treatment. It's so rare it's estimated that there are only 140 people in the uk currently diagnosed with it. Early diagnosis can be life saving. vEDS causes spontaneous ruptures of the hollow organs and medium sized blood vessels amongst other complications.

My diagnosis is very recent but my symptoms have been apparent since childhood. Most medical professionals will never have heard of this syndrome which is why it goes undiagnosed or recognised until a catastrophic complication or fatal episode occurs.

So far I've been very lucky, I'm still here and whilst I am able to I'd like to raise awareness so that others get a quicker diagnosis and are provided with lifestyle advice and professional guidance to support and manage their healthcare.

As this syndrome is known as an "invisible illness" you can't tell just by looking at me that I have many serious and potentially fatal health complications which can take my life at any time with no warning. 

I appreciate any support you can offer, even if it's only by learning about this condition and sharing your knowledge with others. xxx

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