UPDATE: (FULL STORY BELOW - PLEASE PRESS "READ STORY")

I knew from childhood that something wasn't right. I remember experiencing pains flowing up and down my legs, that I couldn't describe quite right to the doctors. Around the age of 8 I remember telling the doctors "it feels like liquid moving around in my legs but it hurts!" They told me it was just growing pains and they would subside, but as I grew up, things only got worse. I used to love sports - a school day with PE was my favourite day! But as my symptoms progressed, I found myself being picked last for the team because I was slower and more cautious with my steps than everyone else, and that didn't make for a winning team mate. My ankles would twist easily and I felt unstable on my feet at all times so running was quickly becoming an impossible feat. Because of this I would be staring down at the floor, carefully planning every step, instead of looking up around me ready to catch a ball for example.

In my late teens and early twenties, I found I could not keep up with my peers. I experienced debilitating pain on a weekly basis, my steps were off balance, my feet were beginning to deform and just a short walk could leave me unable to lift my legs properly to step, not feeling like my legs were mine and being unable to tell where I was putting my foot down after each step. I couldn't walk in heels and I seemed to be constantly in and out of A&E for one reason or another. For years, I would have hundreds of different tests, scans and examinations, but every result was always clear.

For over 15 years I was passed from one specialist to another. I would be diagnosed with something, treated for that something, and then find my symptoms got worse or stayed the same, and then eventually a new symptom would develop and it would be back to the drawing board. I was told I was imagining it all, that I needed to go on a 4 week medical retreat for Hypochondria, that I was just suffering from grief after losing my Dad, that I was allergic to the electricity in the walls and needed to go and live in the mountains somewhere with no internet or Bluetooth. My symptoms were blamed on anything you can imagine and I was embarrassed, almost at the point of giving up completely and accepting that I would never find a diagnosis that fit my profile, until a neurologist saw something the others didn't and sent me off for whole-genome sequencing. This is just a simple blood test that looks at your genes and your DNA - it is all extremely clever and way over my head. A couple of months later, I received a letter in the post - the results were in, and finally I had some answers. I have a gene mutation of the GJB1 gene, which is linked with Charcot-Marie-Tooth disease (CMT for short) of the type 1X.

Receiving that letter, I sat on the floor and had a good cry. I had no idea what CMT was, or what it all meant, but I was so relieved to finally have a concrete result - I had been so worried that this test would come back clear like all the others. Once it sinks in, you immediately you start Googling. What on earth is CMT? Why is this happening? Was it something I did? Is there a cure? What is the treatment?

CMT AFFECTS ONE IN EVERY 2,500 PEOPLE—a rare disease subdivided into multiple subtypes, each with a lower prevalence. Although CMT is a rare disease, it is also the most common inherited peripheral neuropathy.

It is an inheritable peripheral neuropathy that includes many motor and/or sensory neuropathies, axonopathies, myelinopathies, and neuronopathies. Due to the degradation of their nerves, people with CMT suffer lifelong progressive muscle weakness and atrophy of the arms and legs, progressive sensory loss, and CMT can affect other parts of the body. This leads to problems with balance, walking, hand use, and more. It is a degenerative disorder that will likely get worse over time. There currently is no treatment or cure for this debilitating, overlooked disease.

So why on earth am I attempting to run a half marathon? Having a disability can pull you into a very dark place. It is easier to accept your body is degrading in some way and succumb to the isolation of it all. For some, this isolation and surrender to their condition is not a choice, but I am fortunate enough to still be relatively active and live a normal life. I have made adaptations in my day-to-day, and I am still on my diagnosis journey due to the various tests that are still pending for me, but I feel strongly that this year I am ready to take on a challenge.

Since receiving that letter, I have been opened up to a world that so few people know about. Suffering with a muscle wasting disorder is life-changing and scary, and research is needed to keep exploring these conditions and find new treatments for a better future of everyone you know and don't know who is living with a dystrophy or an atrophy. I am attempting this challenge to raise awareness, raise funds for research, and to show support for all the people living with a muscle-wasting condition.

By running with #TeamMDUK, I’m helping to fund world-class research into effective treatments, and life changing support for the 110,000 people in the UK living with a muscle-wasting condition.

This fundraiser is restricted to research related to CMT as MDUK have a specific restricted income pot for that purpose.

All donations and support are greatly appreciated. Thank you!