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.

Friday Thought: On Managing Wellness

Since my last post, I’ve… …travelled to Tuscany, Croatia, Marseille, Paris, and Stavenger… …swum 40 kilometres in one week… …finished one of my dream swim races, the Defi Monte Cristo 5k challenge in Marseille… …missed one of my goal races for 2015, the Arctic One paratriathlon at Dorney Lake… AND… I’ve submitted my name in the […]

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May 9th EDS UK “Managing Your EDS” Conference

As May is EDS Awareness Month, I decided to do what I have never really done before – I signed up for a conference to learn a little more about EDS. EDS UK hosted the medical team from the Royal National Orthopaedic Hospital at Stanmore to present a day symposium on “Managing Your EDS” – […]

Helpless: On Managing Chronic Conditions

You know that feeling when  you comment on something, and then the original post is then deleted? That feeling of “hey, I thought my comment was insightful, and now the whole discussion has just vanished”? Well, this weekend I had that feeling. Without revealing too many details, I had reacted to a discussion about feeling […]