Little known illness even

Sufferer speaks out about her life with rare condition to help others seek support

IT is a little known illness that even medical professionals can miss.

Charcot-Marie-Tooth (CMT) is thought to affect around 23,000 people in the UK... even if they don’t know they have it.

Now one sufferer is speaking out about her life with the condition in the hope of helping others be diagnosed and seek support.

It was always obvious that Dawn Edmiston had CMT.

Her father had the condition and there is a 50 per cent chance of passing it on, so when Dawn was born with foot problems, medics knew immediately what was wrong.

Now 31, she has endured six operations to correct her feet and lives with constant pain.

But Dawn, from Kelvinbridge, is using exercise to tackle the neurological condition in a positive way.

She said: “After my operations I lost quite a bit of confidence because I felt like I had been on a certain path – to graduate from university, go travelling and get a job – then I didn’t know where I was going.

“I felt I wasn’t able to do anything worthwhile and I was missing out.

“It made me doubt my abilities.

“But a positive attitude got me through it. I kept going and returned to fitness and physiotherapy and accepted help from different services.”

Steadily progressive, CMT causes muscle weakness and wasting in the lower legs and feet.

This can lead to problems such as hammer toes, restricted mobility and uncontrollable pain.

Hands and fingers are also affected, making certain tasks such as fastening shoe laces and buttons – those needing fine motor skills – very difficult.

Named after the three scientists who discovered it, CMT is not life-threatening but it can significantly reduce the quality of life of those will the illness and some people end up as wheelchair users.

Dawn had her first foot operation at the age of five.

At 16 she began wearing leg braces, which she would try to hide underneath trousers, not wanting her peers to know she was living with an illness.

Dawn, who studied languages at university before graduating in June 2011, was supposed to have two foot surgeries after university.

But the two turned into five major operations that took up two years of her life.

Screws were put in her ankles to keep her feet perpendicular to her heels, and her heels were cut and reshaped.

‘‘ I felt I wasn’t able to do anything worthwhile and I was missing out

Surgeons broke and then reset the bones in her feet.

Gradually Dawn, who lives with constant pain and burning in her hands and feet, went back to Pilates and joined aquafit, which allows her to do exercises in the water she couldn’t otherwise carry out.

She plays wheelchair basketball, cycles on an electric bike and recently used an all-terrain mobility scooter to explore the forest trail leading to Bracklin Fells outside Stirling.

Dawn said: “It’s about knowing my own limitations but I want to do as many things as I can.

“I used to be very guarded about the condition but now I want other people to know about it.

“Many people go undiagnosed but the early you are diagnosed, the earlier you can start getting help.”

Dawn, who also deals with weakness and fatigue, has joined the charity CMT UK, which she says helps as it is A FATHER told of his heartbreak after his son inherited the same rare degenerative condition as him and was struggling with mobility.

Andrew Frerichs, 52, and son Calum, 6, are both living with Charcot-Marie-Tooth disease (CMT).

But Mr Frerichs, from Falkirk, remains determined that his son will not be disadvantaged by the disease, which caused him some pain growing up.

He was diagnosed aged 11, after inheriting CMT from his late father. His sister Beth Popa, 50, and her nine-year-old twins also suffer from the disease.

Calum’s twin sister Amber, and brother Dylan, 8, did not inherit the disease.

Mr Frerichs said: “We don’t put any limits on Calum. Anything he wants to do he can do.

“He could have it much worse than me, I know children who have it and are in wheelchairs, so we want to do as much as possible with him now.

“He knows his legs are not got and has legs like Daddy’s, but he doesn’t realise he has limitations, and sometimes hurts himself doing things he can’t manage.

“He might fall over when he tries to run if he loses his balance, but he just carries on. It doesn’t hold him back.”

Mr Frerichs had to give up all of his hobbies and his job as a chef after it became too dangerous because of his condition.

He said: “Being a chef became too dangerous. There were too many hot things I could drop or spill if I lost my balance. I have some pretty nasty cuts from knives as I struggled to use them but I went back to university and got a business degree, and now work in the retail business in Glasgow.”

For more info, visit www.cmt.org. uk or to donate check out www. justgiving.com/CMT