Retired plasterer talks about his experience of Charcot Marie Tooth disease

Colin Willams has the muscle-wasting condition CMT ''Picture: Paul Jacobs (151624-1)

Colin Willams has the muscle-wasting condition CMT ''Picture: Paul Jacobs (151624-1)

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  • CMT UK charity urges people to come forward
  • Condition is progressive and there’s no cure
  • Today is World CMT Awareness Day
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A RARE neurological disease means former plasterer Colin Williams has slowly had to change his lifestyle.

But the 54-year-old wants to share his experience of Charcot Marie Tooth disease – named after the scientists who discovered it – in a bid to help others who might also be living with the condition.

It’s important to understand CMT and the charity gives a lot of support to people

Colin Williams

Mr Williams said: ‘My father had CMT and when he was diagnosed I was also diagnosed – that was about 30 years when I was 25.

‘My symptoms came on when I was older.

‘I started getting weakness in the legs and hands and I now have balance problems, weakness of the muscles around my lungs so breathing is an issue, and my vocal chords are paralysed but I’ve had an operation to help me breathe.

‘I was a plasterer but had to give that up as my condition worsened, so then I went into becoming a lecturer in plastering. I retired from that last year due to the fact my voice gives up after a while and stress of work made it worse.

‘It’s hard to use computers because I have no dexterity in my fingers, so general every-day households things I’ve had to adapt, such as doing up a zip. I’ve to put loops on every zip because I’ve got no grip.’

Mr Williams, of Wickham Road, Fareham, is sharing his story as part of CMT Awareness Month, which runs through September. He is encouraging those with the disease to contact the charity CMT UK.

He added: ‘It’s important to understand CMT and the charity gives a lot of support to people. If you have CMT then you’re not alone, you can get support.’

CMT UK said its aware of 3,000 people with the condition, but experts believe there is an estimated 23,000.

Chief operating officer Karen Butcher said: ‘We want to reach out to people and urge them to get in touch.

‘We know what they’re going through and the challenges they face, so we can answer their questions, put them in touch with other people and families with CMT and tell them where they can get help and advice.’

For more, call 0800 652 6316, or visit cmt.org.uk

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