“MY condition is deteriorating and each day is a challenge to remain independent.”

During the 1990s Terese Lawton, who lives in Winton, began experiencing fatigue, muscle spasms, feeling cold and losing her balance.

It was terrifying and there appeared to be no obvious explanation for her symptoms.

In September 1999 she was diagnosed with Charcot-Marie-Tooth Disease Type 1A (CMT) – an incurable inherited condition which attacks the peripheral nerves.

The link came from Terese’s late father and it was difficult for her to come to terms with the diagnosis after watching him become dependent on the care of others.

“I am determined to try and retain a positive outlook, although I have at times been in denial trying to do things when I simply can’t,” she said.

“Simple tasks like getting out of bed, getting dressed, having a shower, putting on the leg supports, answering the phone, raising myself from a chair.”

Terese is often left feeling socially excluded as walking even a short distance without the aid of her walking stick becomes an insurmountable challenge.

She said she even has to think before ordering a cup of coffee – assessing the design of the cup to determine whether or not it will be manageable to lift it with her trembling hands.

Terese added: “Adverse cold, slippery weather conditions, uneven footpaths, add to my difficulties and risk of falling.

“I feel the cold in my home more so with CMT, so rising costs in utility bills cause me concern.”

Terese has spoken out about her illness as part of a drive by charity CMT UK, based in Bourn-emouth, to raise awareness of what sufferers endure.

Of her support network there, Terese said: “You will find a great bunch of people; some are volunteers who encourage healthy living, fun and ability rather than disability.”

Progressive condition

Charcot-Marie-Tooth, one of the world’s most common, inherited neurological conditions, is named after the scientists who discovered it.

Currently incurable and steadily progressive, it is thought to affect some 23,000 people in the UK, causing muscle weakness in the lower legs and hands.

People with CMT get easily fatigued, walk awkwardly and endure painful limbs, twisted ankles, balance problems and falls.