welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!
patient education

The Daily Life of a Person With Vascular Ehlers-Danlos Syndrome

key information

source: The Mighty

year: 2016

authors: Matt Smith


This morning I woke up ready to take on the world, full of zest, a spring in my step, a sparkle in my eye, with plans to have a walk on the beach. It’s quite bizarre to think that within just a few minutes, whilst sitting down, having a spot of breakfast, everything changes. Rolling around on a bed in excruciating pain, left to make a possibly critical life or death decision of whether or not a hospital visit is needed. If that isn’t bizarre enough, it’s often a regular occurrence.

A life with vascular Ehlers-Danlos syndrome makes for a very different life. Looking at me you would never know it, but my days are full of these little decisions that could have major consequences. Every activity carries a risk assessment; I’m always weighing up the consequences to the action. From a simple kick of a football with the offspring, which often leads to multiple ruptures of veins in the leg, to having a trek up to the summit of Ben Nevis, which, potentially, could have major life-threatening consequences. Of course, Ben Nevis had to be done, and despite the potential problems that could have occurred, I considered that to be quite a life-altering experience and quite the achievement.

read more