MOST people will have never heard of Charcot-Marie-Tooth syndrome.

Neither had Meryl Baldwin when she was diagnosed with the rare condition in her late thirties.

She had always had what she describes as a funny walk, which doctors had observed, but failed to pinpoint for what it was.

Charcot-Marie-Tooth is named after the three scientists who discovered it.

It describes a genetic neurological disorder which can cause uncontrollable pain, chronic fatigue and deformities in the lower legs and feet, leading to problems with balance and causing falls.

Meryl, 57, always felt something was wrong when she was growing up.

Doctors also noticed the arches in her feet getting higher and so she underwent operations at both nine and 11 to straighten them.

However, it would not be until decades later that she finally understood what these group of ailments were.

She said: “It does makes me a bit angry to think about, but having a diagnosis doesn’t make it go away.

“My high school years weren’t very pleasant. I was bullied because of the way I walked so that was difficult.

“I was also never good at PE. I couldn’t run and jumping was impossible, but also I didn’t have the energy.”

It is estimated about 23,000 people in the UK have CMT.

Steadily progressive, it causes muscle weakness and wasting in the lower legs and hands, leading to problems like hammer toes, restricted mobility and sometimes scoliosis.

Braintree and Witham Times:

An example of how the hands can be affected. Photo: CMT UK

The hands and fingers can also be affected, making tasks needing fine motor skills such as fastening shoe laces, difficult.

Although the condition is not life-threatening, for many people it will impact on, and significantly reduce, the quality of their lives.

Some people, like Meryl’s 85-year-old mum, will even end up wheelchair bound.

Meryl said: “My mum and uncle were diagnosed with CMT. Walking was an issue for them, but that was the only sign they had of it.

“In those days people didn’t talk about it. My mum used to tell people I had arthritis or something similar.

“When I was 11, I had a letter from Cambridge Hospital to say my mum was showing signs of CMT but I never saw that letter until my thirties, which led to my diagnosis.

“They tended to sweep it under the carpet. They didn’t like people to know there was anything wrong in those days.”

Today, Meryl, of East Bergholt, manages with two walking sticks and has a bar above her bath to support her getting in and out.

After two knee operations, the excruciating pain she once felt has completely vanished.

One leg is still larger than the other though, resembling champagne bottles because of their inverted shape, she explained.

Fatigue is also still an issue, but the condition has not affected Meryl’s hands, meaning she can enjoy her job as a hairdresser, and she still drives.

It did however, almost stop her from becoming a mum.

She said: “I didn’t want to put a child through what I’ve been through as I suppose I was affected mentally by the bullying.

“But luckily my daughter doesn’t have it.

“I can still do most things but CMT has stopped me doing activities where I think I might be a burden to others.

“For example, I like to go kayaking, but I would need help getting in and out of the kayak so I tend not to do that anymore.

“I’ve also never been able to wear high heels because of my high arches as I’d fall over, so I’ve never felt that I’m fully able to dress up.”

Braintree and Witham Times:

Problems with the feet such as high arches can be a sign. Photo: CMT UK

September is CMT Awareness Month as launched by the charity Charcot-Marie-Tooth UK before the global celebration on September 29.

The purpose is to stop people suffering in silence, to push for better diagnosis and give advice on how to manage the condition as well as how to access support with benefits, jobs and family issues.

Karen Butcher, CMT UK’s chief operating officer, says while CMT is incurable, it can be managed effectively if a person is referred to the right clinicians in good time.

However, as the NHS has been forced to tighten its purse strings, the charity has found some of its members with the condition are being denied vital referrals to specialists who may be able to delay, or even improve, their symptoms.

She said: “For example, physiotherapy can help people with CMT by strengthening their muscles, but some people still haven’t been referred and they can’t afford to go privately.

“In addition to this, the charity also offers advice and support to those who think they might have the condition but haven’t been diagnosed yet.

“Sometimes the symptoms aren’t so obvious, but due to the fact CMT affects the hands and feet, it could be they have trouble balancing, find they regularly trip or fall over and are constantly tired.

“For some women, a telling sign is they can’t wear high heel shoes due to high arches and hammer toes.”

There is also a 50 per cent chance CMT can be passed on to a child which is why the charity offers professional genetic counselling.

For more information, visit cmt.org.uk.