What is Charcot Marie Tooth?

CMT, or Charcot Marie Tooth disease, is a progressive degenerative disease of the nerves. Caused by genetic anomolies, CMT impacts 1 in 2500 people, including me. It impacts each person differently. In general, CMT impacts the way the nerves transmit signals to muscles, leading to muscle atrophy, reduced sensation, and muscular imbalance. Efforts are underway to find a cure for CMT – by clicking on the CMTA STAR Appeal button above, you can help by contributing vital funds which will be used to support ongoing research and testing for a cure.

Welcome!

I’ve changed my perspective on limitations. I believe in pushing myself to find my limits. And then pushing those limits to redefine them. In order to beat them.

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In 2004 I received a diagnosis of CMT – a progressive degenerative nerve disease. In 2007 I received a diagnosis of Hypermobility Ehlers Danlos Syndrome. In 2009 I decided that I needed to change perspective on living with these supposed limitations. I decided to see just how strong, fit and able I could become. So that if, someday, I were to decline, I would do so from a position of strength and with a lifetime of laughter and experiences that I would have collected along the way.

On this site write about all aspects of my life – from sport to the kitchen, from what I read in the newspapers to what I hear from my doctors. I share how I manage my health and well being, and about my approach to fitness and healthy living. You can support the efforts to find a cure for CMT. You can follow my progress as I seek to constantly redefine – and beat – my own limitations. And I hope that you can find a bit of inspiration to do the same.

Allysa Seely: On The Road to Rio

As regular readers of my site know, I write about my views of life while managing two chronic conditions: Ehlers-Danlos Syndrome and Charcot Marie Tooth disease. I write about what triathlon – and specifically paratriathlon – has brought to my life in terms of giving me a goal-oriented way to manage my health. And in […]

Have I Bitten Off Too Much?

Yesterday at the Triathlon England London regional committee meeting, I put forth my ideas for some projects to encourage the growth of paratriathlon and the education of our clubs, event organisers, and coaches. It was exciting stuff. Exhilarating. Positive. I felt a tremendous buzz and optimism from the discussion, finally, FINALLY I was able to […]

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On Death, Grief, Healing, Forgiveness & Humour

What we have gone through since our father died has been nothing short of Lifetime drama material.   Someday I will write about it, more than what I have already shared on the odd Facebook post, Instagram photo tribute, and this blog. When your last parent dies it is all just so final. And to have the […]

The Paratriathlete Diaries: Sweat and Tears

Training involves sweating. Sometimes not training involves sweating too – as sweatiness is pretty common for folks with EDS (Ehlers Danlos Syndrome). So when my online grocery shop gave me the option of getting a 2-for-1 on a new variety of my deodorant of choice, of course I took it (and clicked twice). I was […]