I Was the 140th Person in My Country to Be Diagnosed With My Rare Condition

 

I refuse to be a number, although #140 is quite an achievement. You see, in May 2016 I was declared #140 out of 140 people in the U.K. to be diagnosed with vascular Ehlers-Danlos syndrome (vEDS). I reminded myself at the time that I was never first in the queue for anything, so I was never going to be 1/140.

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

It took a lifetime of health problems and nearly three years of diagnostics to achieve #140 status. You see, we’re rare creatures, our symptoms go ignored for years until something serious manifests itself and scares the hell out of your medical professionals.

The days and months leading to #140 were a real struggle. You see, you can’t see vascular Ehlers-Danlos – it’s sly, cunning and a true bully. It spreads it venom quietly within your body, causing catastrophic devastation in its path.

 

I’d lived for 44 years unaware that my body was succumbing to this silent, non-discriminatory, selfish condition that has no respect for life.

Even now, with #140 written all over my medical notes, the medical profession doesn’t take me seriously. Instead, they look at me and state that familiar line: “You don’t look ill!” Sometimes I get a little queue of medics wanting to look at me. Ticking off their list, oh yes, she has tiny lobeless ears, small thin nose and big deep set eyes.

On a good day in the hospital, medics confuse my vascular type with the hypermobile type and ask me to perform circus tricks, like stretching my non-stretchy skin or showing them how my joints dislocate. I just roll my big eyes and tell them, “People with vascular Ehlers-Danlos have fragile skin that tears and they bruise easily, so I’m afraid I can’t perform your requests.”

Being #140 changed my life in every aspect; it took my career, at times it’s taken my dignity, but it’s also given me the freedom to choose what the next chapter in my life should be. That’s one of the positives I cling on to.

I was never going to allow myself to be defined by #140, how could I? I respect the fearless power it holds, but I’m never going to let it take over my life.

Somehow, despite how much I try, it still has the ability to stop me in my tracks and remind me it’s there, lurking within my body, poking fun at me while I’m doing the things I enjoy.

Living with vascular Ehlers-Danlos is like riding a roller coaster. Some days you trundle around the track enjoying the ride. Other days you cling onto the roll bar, gripping on for dear life as it’s following its curves and loops at full speed, hoping it’s going to slow down. Only to find it coming to the complete stop at the end and you think, “I made it”

I can’t change my diagnosis. I can’t prevent this condition from killing me. It cannot be cured or treated. What I can do is remain as positive and future-focused as I can and accept that life is a gift, so I’ll enjoy it as much as I can!

Thinkstock photo via CCeliaPhoto.