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

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.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

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.

Some of my most vivid memories as a child, which is probably quite sad to say, are of my father and the pain that I have seen him go through for so many years. Many times I have seen him down on his knees, hunched over in the throes of yet another heart attack. Even more recently, one minute he was sitting down talking on the phone, finished his conversation, stood up and immediately slumped back into the chair. A few hours later, nurses were telling us to prepare for the worst and my brother began the journey from Germany to the UK hoping he would make it here in time to see him. Over my father’s lifetime, these have been regular occurrences, a battle that rages on deep within the confines of our very own bodies, creeping up when we least expect it. There’s no cure here, no treatment. No one is going to magically save us; in fact, hardly anyone even knows about us, and seeing as I believe there are only around 140 of us diagnosed in the UK, why would they?

I often question how and why there is so little known about vascular Ehlers-Danlos syndrome. It doesn’t seem fair to me that something so horrendous can exist. Veins, arteries and hollow organs that can spontaneously rupture or dissect, lungs that can suddenly collapse? Innocent lives are lost so young. And of course, it’s a genetic mutation, so it often doesn’t just stop with one family member — whole families are being torn apart and wiped out by this mutation. There’s so much devastation, yet many in the medical community have never heard of it. I wish there was something positive I can say about vascular Ehlers-Danlos syndrome, however there really isn’t. The harsh reality is that it’s a cold blooded serial killer, a silent unseen assassin with complete disregard to human life, which cannot be stopped.

With that said, I will go on to live my life in the best way possible. I have now written and published a book through Amazon entitled “Vascular Ehlers-Danlos Syndrome: The Journey Begins,” which is becoming a tool to spread awareness and I shall fight vascular Ehlers-Danlos syndrome in every way, on every front. I know it’s going to knock me down, but I will get back up and push forward with every ounce of life that flows through me. I will continue to say its name at the top of my voice until it’s heard, until it’s understood and one day, just maybe we will find away for people to live safer lives. Vascular Ehlers-Danlos syndrome — look it up, spread the word. Help us find our cure.