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

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.

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.

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

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.

"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. 

Andie was a Holley High School graduate studying to be a radiologic tech at North Country Community College. But in January 2019, the 20-year-old suddenly died after one of her arteries ruptured.

I know #REDS4VEDS DAY is over but for the families it's never over. We have to fight each and everyday. There are so many families that may be affected by this mutation and not know it.

You have a friend of a friend of a friend who's an A&E Dr. She sees your #reds4veds status, is intrigued to find out more, and looks up Vascular Ehlers Danlos Syndrome.

This picture was taken about a year ago when I had my first of many dissections due to myself having vEDS and at the time not knowing of my diagnosis.

Annabelle was born three weeks premature on 25th February 2009 weighing 6lb 5oz. We noticed as a baby she bruised very easily and without explanation.

Hi my name is Chris and I would like to share my story about how I got my diagnosis and how I'm dealing with it for the rest of my life.

I have started to write up my story and also to express my story through my art too.

A patient experience of A&E. For every major vascular event I have had, doctors have either tried to discharge me from A&E.

After the constant fighting for years for answers, being doubted, being dismissed, I never gave up for Mia.

“My name is Alicia and I’m 14, I’ve wrote at least 5 times trying to work out what to say but this is how VEDS has made me feel."