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.

Hi! I’m Donna

I’ve changed my perspective on limitations. I prefer to live on the edge – the edge of my limits. I find my edge. I feel it for a while. And then I take a leap.

In 2004 I received a diagnosis of CMT – a progressive degenerative nerve disease. In 2007 I received a diagnosis of Ehlers Danlos Syndrome Hypermobility. In 2009 I decided that I needed to change my point of view about living with 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.

The Five

As most readers of this blog know, I am active online supporting the CMT community, particularly through our CMTAthletes Facebook Group. But what some people might not know is that I also am a site admin for two Ehlers Danlos Syndrome Facebook Groups. On one of these EDS groups, my fellow admin and friend Justine posted […]

Issues with my Tissues: A Review

In 2014 a documentary about Ehlers Danlos syndrome, Issues with my Tissues, was released. The 48 minute film chronicles the journey of Lara Bloom, Chief Operations Officer for Ehlers Danlos Support in the UK, as she trains for (and does!) the London Marathon. First off, I have to hand it to Lara. She does a […]

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Cobbles

Oh cobbles. Most days I go about life, more or less unaware that I have a nerve disease. And then somedays I walk on cobblestones. And I remember. The uneven surface of the cobbles is murder on my ankles. I have a real tendency to roll my ankles due to the muscle atrophy I have […]

The Stars in My Life

I’ve often said that friendships are the stars in my life. Shared memories their light. Some friends may be fleeting, in our life for a moment. Some may be around for years and years, our suns. But no matter if fleeting or forever, the memories… Those shared memories stay with us, forming our own personal constellations, […]