Fairlight woman speaks out about rare neurological condition

A Fairlight woman has spoken out about her neurological disorder which is so little-known that some medical professionals have never even heard of it.

Monday, 10th September 2018, 4:05 pm
Updated Monday, 10th September 2018, 4:08 pm

Charcot-Marie-Tooth (CMT) can cause uncontrollable pain, chronic fatigue and deformities in the hands, lower legs and feet, leading to balance problems and falls.

Steadily progressive, CMT causes muscle weakness and wasting in the lower legs and feet, leading to problems like hammer toes and restricted mobility. The hands and fingers are also affected.

Joan Hall from Fairlight started noticing symptoms aged 11 or 12, when she kept falling over.

A few years later, as a young woman, she found herself unable to stand up in high heels due to weak ankles.

As her symptoms progressed into her 20s, Joan went to her doctor for help, but says her GP ‘did not have a clue’ what could be wrong.

She was referred to the National Hospital for Neurology and Neurosurgery in London where doctors carried out electrical tests on her muscles to diagnose CMT 1A, the most common form of the disorder.

Joan said: “I was pleased to have a diagnosis, but I was not particularly affected at the time.

“I was busy working and having children and I still walked about fairly well then.

“It’s got worse since I had the children.

“But it was good to know what it was, rather than not knowing.”

Now aged 71, Joan struggles to open jars, do up buttons, knit and sew due to the weakness in her hands.

She uses walking sticks, a wheelchair and a mobility scooter to get around.

Joan said: “It does not affect your brain and memory, it’s basically a physical deterioration.

“My ankles are very weak and my legs are very weak.

“I have hardly any muscle left in my legs.

“I cannot walk very far unfortunately, even with walking aids as I get fatigued very quickly.”

She added: “A lot of people are worse than me.

“Some people are in wheelchairs at the age of 25.”

The condition is inherited and one of Joan’s two daughters has been diagnosed with CMT.

There is currently no treatment or cure available, although medical science is catching up.

Joan said: “There’s quite a bit of research going on into cures and prevention of the condition in recent years and they are working on gene therapy.

“So that’s a positive thing.”

CMT Awareness Month was launched by charity Charcot-Marie-Tooth UK on September 1.

This year’s campaign aims to raise awareness of the symptoms of CMT among people who have not yet been diagnosed; make more medical professionals aware of the condition; let people who have CMT know that the charity exists and is there to offer advice and support; and to raise funds to help Charcot-Marie-Tooth UK members and pay for vital research.

Charcot-Marie-Tooth UK offers advice on how to manage the condition as well as support with benefits, jobs and family issues.

Find out more at www.cmt.org.uk or call 0300 323 6316 or donate by visiting www.justgiving.com/CMT