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'I'm afraid my children have rare disease that makes people fall over': Charcot-Marie-Tooth syndrome causes balance problems and muscle weakness

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A MOTHER fears her two children have inherited an incurable disease that causes people to fall over.

Sophie Walker, 40, has been diagnosed with Charcot-Marie-Tooth (CMT) disease after suffering inexplicable falls for more than 20 years.

CMT is a group of inherited conditions damaging nerves. It causes falls and balance problems and sufferers often experience muscle weakness in the feet, ankles, legs and hands, an awkward way of walking, highly arched or very flat feet.

Now, Mrs Walker could have to wait years to find out if her two children Sylvia, three, and 18-month-old Jonas have inherited the disease.

She said: "Sometimes I look at Sylvia's feet and I think they are completely normal and other times I think she definitely has it.

"But they are both lovely, happy children and, at this age, they are not in any way limited in what they can do. There is no holding them back.

"It's too early to tell at this stage and, obviously, I have some concerns, as I'm their mum.

"But I think by the time they're five, I will be able to tell whether they've got it or not and I can help them accordingly."

While some with CMT usually start showing symptoms between the ages of five and 15, others may only develop symptoms in middle age or even later.

Mrs Walker's father was diagnosed with CMT in his 40s when she was about 12, but doctors told the family the hereditary disease was only passed to boys.

"No one even thought there was any chance I would have it, although I did have problems with my feet and ankles growing up," she said.

"I used to fall over a lot as a young child but more so as I got older," said Mrs Walker.

"I noticed when I was in my late teens and early 20s and I was going out, I would just fall over.

"I would go to sit down or get off a bus and I would just fall over. It used to confuse me and I had difficulty keeping on shoes unless they were lace-ups. Luckily, I'm more inclined to wear Doc Martens than high heels but it was a problem."

Mrs Walker, a handbag designer, was referred to hospital in her early 20s and had special insoles made for her feet, which are wide with high arches and tendons, and she places all her weight on the balls of her feet.

However, Mrs Walker, who lives in Bridlington with her husband Jonson, 35, and the two children, was only diagnosed with CMT when she was 36 and three months' pregnant with Sylvia.

"I was a bit upset," she said. "I knew it was progressive and I suddenly thought here I was with this condition with a baby on the way.

"I looked into it and realised it can be very limiting and debilitating but, at the moment, I'm quite lucky as it doesn't really restrict me too much compared to how it could do.

"I can't run or play tennis. I do yoga and go swimming but I have to be careful.

"I've been pushing a buggy for the last four years, so that's helped, but when I've been dropping them off at nursery, that's when I notice my left foot is quite weak and I have to make an effort to lift it."

But she knows the future is uncertain, as no one can pinpoint exactly how her condition will progress and affect her ability to work or whether or not her children will be affected.

"I have some concerns about whether or not they have it and I have spoken to genetic counsellors but I haven't made any definite decisions about whether to have them tested or not," she said.

"I can only hope, if my children have it, they have the fairly mild symptoms I have had."

No known cure for progressive disease

About 23,000 people in the UK are believed to have CMT, which causes muscle weakness in the lower legs and hands.

Also known as hereditary motor and sensory neuropathy, there is no cure for CMT.

It is a progressive disease and symptoms gradually become worse, making everyday tasks more and more difficult.

People with CMT often feel exhausted, walk awkwardly and endure painful limbs, twisted ankles, balance problems and falls.

Visit cmt.org.uk for more information, advice and support.


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'I'm afraid my children have rare disease that makes people fall over': Charcot-Marie-Tooth syndrome causes balance problems and muscle weakness


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