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Sarah Lyn Strong finds it difficult to walk, which is hardly surprising as she only has size one and a half feet to balance on.

The 26 year old doesn’t even use all of that small foot either she walks balancing on the sides of her feet. Her insoles are high and turn inwards and her toes are curled up underneath, leaving little to balance on.

Walking in a straight line is impossible and finding shoes is pretty hard to do as well. Most of the time she wears children’s walking boots, which is fine she says, until she has a party or special event to go to.

And this Saturday the woman, from Denton Holme, Carlisle, has a very special event to attend her wedding.

My other half’s been wonderful and it doesn’t matter how many times I have to tell him he might have to push me around in a wheelchair in 30 years, he still says he doesn’t care.

She is marrying Karl Mumberson, 31, at Dalston Church and will be wearing white Dr Martens when she says ‘I do’.

Sarah Lyn, who works as a lawyer with Cumbria County Council, has always had problems with walking. In fact she never learned to walk when she was supposed to and, as she says, has “never walked right since”.

It isn’t. The condition is named after three physicians who first identified it: Jean Martin Charcot and Pierre Marie in Paris, France, and Howard Henry Tooth in Cambridge. Although the three identified CMT in 1886, almost everyone Sarah Lyn talks to about it hasn’t heard of it before, including many doctors.

Sarah Lyn has decided to speak out about living with CMT and how it has affected her life to raise awareness of the condition as part of CMT awareness month.

The condition is hereditary, steadily progressive and currently incurable. It causes muscle weakness in the lower legs and hands Sarah Lyn describes is as like feeling through thick gloves. She would know if someone was touching her toe but would not be able to say which toe.

Sarah Lyn herself did not know the name of her condition or that it even had a name until she was diagnosed in 2012.

For most of her life she knew something was wrong because her father and gran, who she never met, had the same problems, though they showed them in a different way.

Her dad was a clumsy child but then was fine until he was in his late 40s when he started showing symptoms. CMT is like that, it differs from person to person.

Sarah Lyn says: “Because I knew that I presented differently to everybody else anyway, I never bothered looking into it. I knew there was nothing they could do about it, so it would have been nice to know but I focused on just carrying on.”

She carried on through some difficult times like when children picked on her at school or when an extra member of staff had to go on the school trip to hang back with her because she walked so much slower than everyone else.

“I have had the low points” she says, “I don’t think anybody that has a condition like this wouldn’t. If they tell you they don’t have low points, they’re a liar. It is difficult.”

She says of CMT: “It’s had a big impact. I think a lot of who I am now is because of CMT.

“When I was young it affected my confidence quite greatly because you know at school, kids are kids, so I got picked on a lot at school, I had trouble making friends, I had real difficulty meeting new people because I had to explain it to people.

“Particularly at that point, because I didn’t know what it was, trying to explain to people that I have this unknown medical condition. People tended to assume I was drunk.”

It was only when she was at Northumbria University studying law that Sarah Lyn finally decided she had to do something.

“I got to a point where the pain in my knees was so bad, I couldn’t sleep,” she says, “I got into a mad panic because I knew that whatever I had it was degenerative.”

Being diagnosed with CMT was a relief in many ways. She suddenly found out she was not alone, that there were many people who had CMT. Through the charity CMT UK, she connected with other sufferers and met a network of people who shared their experiences and supported each other.

Karen Butcher, the chief operating officer of CMT UK, who herself has CMT, says feeling isolated is not uncommon for people with the condition.

The charity is aware of 3,000 people with the condition, but experts believe there are about 20,000 people in the UK who have CMT but do not realise it.

When asked what support CMT UK could provide for people, Karen said: “Primarily it’s knowledge that people don’t often get once they are diagnosed: the details of the condition that medical professionals rarely have the time to go into management strategies, details about genetics and whether their children will get it (and how to find out), benefits and daily living issues.

“But as I and most of our trustees have CMT, it’s also about just talking or emailing or Facebooking someone who really knows what it’s like to have the same condition.

“A feeling of isolation is very common. We can help with that too, as we put on events like our annual conference, an activity weekend for teenagers with CMT, and others.”

Being diagnosed also helped Sarah Lyn explain what her condition was to other people. She says: “University was when it all came together for me. I got used to explaining it to people. You learn the best way to explain it in the smallest number of words possible that they will understand.”

She explains that people’s nerves are like copper wires with plastic coating and while her copper wire is fine, her plastic coating doesn’t work and it makes her short circuit.
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