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.
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.
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Becky
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.
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.
This is my story and there are so many more just like it. It begins on 23 October 2009 when our son, Ryan Luke Eaton died on this day aged just 17 and a half, barely two months after his granddad Bryan.
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 Syndrome.
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.
Natalie Paquette tragically passed away to vascular EDS in July 2015. Natalie was just 12 years old. Today (2nd February 2019) is Natalie's 16th Birthday, please join us in celebrating this special day and enjoy watching her videos.