ALISON Leach suffers from a painful inherited neurological condition that few people have heard of but which affects around 23,000 people in the UK.

And this month – Charcot-Marie-Tooth Awareness Month – Alison is one of the sufferers trying to make people understand more about this debilitating disease.

Named after the three scientists who discovered it, CMT can cause uncontrollable pain, chronic fatigue and deformities in the hands, lower legs and feet, leading to balance problems and falls.

Alison was 11 and living in Australia when her CMT was first diagnosed. She was born in Bolton but her parents emigrated. Twelve years ago, she returned to the town and is now married and living here.

For the young Alison, the balls of her feet kept swelling and her feet had started to re-shape themselves. She suffered pain but her real problems began later, in her mid teens, when she started having debilitating back spasms.

As a teenager and into her 20s, here life and movement were curtailed by CMT. Now 39, she has orthotics and special shoes – which means she owns one pair of trainers and one pair of specialised NHS boots. When the pain is bad, she is often confined to bed. She takes diazepam to relax her muscles and co-codamol, a mixture of painkillers paracetamol and codeine. Unfortunately, the after-effects can make her feel groggy and concentration difficult.

She has hammer toes, high arches and numbness in her extremities. She still gets the muscle spasms in her back and hands and can get very tired.

When she’s tired, her leg can drag and her balance can be affected. “I must look drunk sometimes!” she laughed, “But it really is just the CMT.”

Alison works as a financial assessment officer at Bolton Town Hall where management and staff have been particularly understanding. She works three days in the office and one day from home.

She has a blue badge and a mobility vehicle but, because she looks fit and healthy when she’s not walking any distance, she has had “funny looks” from people who wrongly assume she is not disabled.

“Yes, it is a bit difficult,” she admitted. “I suppose it would be more helpful to people like me – or anyone suffering from a ‘hidden disability’ - not to be judged.”

One aspect of CMT that Alison was very concerned about was its genetic nature. It transpired her mother also suffered from CMT, although not in the same severe form, and that she had a 50 per cent chance of passing it on to her own child.

As a result, she and husband Philip went for genetic counselling at St Mary’s Hospital in Manchester.

Armed with all the facts, they decided to go ahead with their family plans – and the result was a beautiful little girl, Arya, now three and a half years old, who does not have CMT.

Alison helps her own mobility with regular sessions in a hydrotherapy pool and stretching and strengthening at weekly Pilates classes.

This year’s campaign by CMT UK is aimed at raising awareness of symptoms among those who may have it but have not yet been diagnosed and helping medical professionals become more aware of it.

Mary Reilly, Professor of Clinical Neurology and Consultant Neurologist at University College London Hospitals, explained: “CMT does not describe a single disorder but a group of conditions.

“It is important to determine exactly what kind of CMT someone has in order to improve their quality of life and this can only be done once a diagnosis is considered in a patient.”

* For more information go to the CMT Association at http://cmt.org.uk/

or call 0300 323 6316.