If you know me, you likely know I'm quite a bendy, injury-prone individual.

In 2015 I fractured my spine in 3 places. How? I was walking down the street. That's it. No trauma, No run-in with a car, fall from a great height. I was 20 years old. Oh, and it took 3 months before I even had a diagnosis. 

At first, the doctors thought I'd pulled a muscle or pinched a nerve. I was screaming and crying out in pain. As the days turned to weeks, they sent me for an MRI.

How could a seemingly fit and healthy young woman just snap parts of her back, with 0 trauma? 

I turned to recovery and 18 months later, I started rowing again. A sport, I'd fallen in love with 6 months prior to the injury.

I naively presumed that was the last of my medical mystery. One morning I work up with over 100 bruises down my legs. I became extremely fatigued, falling asleep in front of friends and colleagues. On one occasion, I lost all feeling from the waist down and had to be lifted out of my rowing boat. My hands started shaking, a reoccurring tremor started to form. Every day I'd wake up with a new pain or ache, only for it be replaced with another the following day. 

Thankfully, I had private medical insurance and over the course of the two years that followed, I visited 8 specialists, had 9 x-rays, 3 ultrasounds, countless blood tests and a CT scan for food measure. Neurologists were stumped and I began to question if I was a hypochondriac. 

Then finally, I was diagnosed. Just like that, it had a name and I presumed we'd look treatment to get rid of this weird 'syndrome'.
Turns out, there isn't a cure. 

Ehlers-Danlos syndromes (EDS) are a group of disorders that affect the body’s connective tissues including the skin, joints, blood vessels, gut, and many other organs and tissues. These disorders arise because of abnormal production and function of collagen and allied connective tissue proteins. It is a chronic, life-long condition.

At first, It felt like a major breakthrough. Then I was discharged with no-one to oversee my care with an illness that affects multiple systems of my body. If you live with EDS, you're very much left to 'get on with it', regardless of where you live in the world. 

As it happened, I'd been presenting with the condition since I was born, continuously missed by practitioners. Awareness of EDS is incredibly low and often, the advice isn't accurate. 

I can't tell you how many times I was told, I'd never row again. Don't get me wrong, it's been a hard-fought battle, often overdoing it and getting injured again. But, overall rowing helps me manage symptoms, in particular, fibromyalgia (chronic pain) and M.E (chronic fatigue). 

I was due to complete Ride London in August, cycling 100miles around the capital. For a person with EDS is a bit like running the marathon. Sadly, it doesn't look like that will be going ahead, so instead, I'm going to ride 260k, in 2.6 days to raise £2600 (I hope!) for a charity that is changing the game for people living with my condition.

Will you sponsor me?

The Ehlers-Danlos Society is dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes. Their goal is worldwide awareness, and better quality of life for all who suffer from these conditions, regardless of geography.