Our Stories

Vascular EDS is such a rare condition that coming across real life stories shared by patients and families can be extremely hard to come by. 'Our Stories' provides a rare insight into how life changing Vascular EDS can be and in certain cases has proven to be fatal.


We hope you will have a better understanding how devastating Vascular EDS can be and at the same time powerfully positive for those who have to cope day to day living with this life changing condition which sadly for some has led to the loss of a loved one.


If you would like your Vascular EDS story adding please click here to join us.

Becky's Story

The day I got the diagnosis I was washing the car in preparation for my trip to Scotland to marry my fiancé Chris.

Debbie's Story

Debbie Eaton describes her body as a “ticking timebomb” and has bravely spoken out about the devastating illness which has blighted her life and killed her teenage son.

Alicia's Story

It was on the 24th of August 2013 that VEDS finally became Alicia's reality. We had received the clinical diagnosis a few months earlier and then the devastating phone call to confirm the genetic results.

Helena's Story

EDS had played a devastating role in my family and my life up to this point. My Mother (aged 29) passed away from an aortic aneurysm when I was 5. 

Ryan's Story

Well ermm where do I begin? Do I start on how I felt when I found out the news that my four year old sister has a very rare condition called Vascular Ehlers Danlos, or how life is at the moment?

Kerri's Story

"Don't google it Kerri" 4th May 2016 will be etched in my memory forever. I was painting the fence in the garden having finished work for the day. 

Ryan's Story

Those who didn’t know him would not have realised was that he lived with a rare life limiting medical condition which finally claimed his life at the age of 17 in October 2009.

Ted's Story

We waited 2 months to get the devastating news. Words cannot express our emotions that day but we knew this was the beginning of a new journey.

Destiny's Story

My name is Destiny, and I'm not your typical teenage girl...I'm fighting an unseen battle. I suffer from a rare disease. Vascular Ehlers-Danlos Syndrome. 

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