1:30pm Sunday 8th March 2009
To look at bubbly Sam Lewis, you would never guess she suffers from a rare disease which affects her balance.
But ask the 27-year-old, pictured left, to walk on the cobbles in Skipton High Street and you would discover she would not have a hope of stepping on them without falling over.
Skipton Building Society worker Sam suffers from a little-known condition called Charcott Marie Tooth Disease (CMT), which is named after the three scientists who identified it.
CMT is a hereditary neurological condition affecting one in 2,500 people in the UK. It causes nerve damage leading to muscle wastage in the feet, ankles, legs, fingers and arms.
The most common symptoms can be bone abnormalities in the feet, including high arches, hammer toes and “foot drop”.
Sam copes extremely well with the disorder, for which there is no cure. But she has become increasingly aware that fellow sufferers often feel isolated and lack the information that would help them.
And so, from her bedroom at her home in Ingfield Crescent, Settle, she has launched the UK’s first CMT website providing an insight into the condition and how it affects sufferers.
The website has a free forum offering support and advice to others with CMT and their families.
“I was diagnosed with the condition when I was five- years-old,” said Sam. “I was adopted so there was no family history, but it became clear what was the matter by the way I walked. I also tripped a lot and fell over.
“I can lose my balance really easily, particularly when I stand still; it’s best if I keep moving. Because I have no muscle tone in my feet I can trip over fresh air.
“To look at me you wouldn’t think there was anything wrong, but it varies from day to day how I feel. Some mornings I’m tired even before I set off to work.
“I live a relatively normal life as I’ve got used to it. I do have to think carefully sometimes. For instance, Skipton’s full of cobbles, but I can’t walk on them without falling over as my ankles twist really easily.”
Sam’s website has already generated a great deal of interest, with more than 50 fellow sufferers logging on to the internet-style chat room.
“I want to raise awareness of the condition,” she said. “A lot of time the condition can go undiagnosed as it can be confused with other things. Sufferers need help in managing the symptoms as there is no cure.
“I set up the website to benefit me and to benefit others. The information on the internet is largely from America and so I wanted to establish a forum for support in the UK.
“The website has only been set up since last November, but the interest has grown very quickly. The feedback has been wonderful. We’ve got members on our forum from all over the UK, with the nearest being in Skipton and Leeds.
“We compare notes on our condition and talk over the internet about the things that we find difficult in our day-to-day lives which other people take for granted.”
Sam’s website has certainly struck a chord. Jennifer, one of the subscribers to the site, said: “Your description of how CMT affects your life is spot on for me and probably all sufferers.
“Sometimes I get frustrated that I don’t look more disabled because people around me don’t, and probably can’t, understand what I go through on a daily basis just to get around the house thinking about and calculating every step.”
And Sandy says: “Sam … brutally and beautifully honest ... you described how I feel but don’t and can’t seem to express even to my own family.”
You can view the website at charcotmarietooth.freeforums.org.
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