Kincardine mum Susan determined to live her life after being diagnosed with rare Charcot-Marie-Tooth disease

A KINCARDINE mum who was diagnosed with the rare Charcot-Marie-Tooth disease is raising awareness of the incurable condition.
Susan Wallace, 52, of Bank Street, has lived with CMT all her life but it’s only in the past few years that she realised what she had been struggling with. Despite the name, it’s actually a neurological disease which can cause uncontrollable pain, chronic fatigue, balance problems and falls.
“It’s a weird name, people think it’s to do with teeth!” said Susan. “It’s good to get the word out and let people know.
“Tiredness is the biggest thing. I’ve got to keep exercising to keep my muscles strong and fit but I get tired quickly. It’s a vicious circle and you sometimes think ‘Is it worth it?’ “Sometimes when I exercise my legs can be in agony at the bottom of my calves, or my foot goes to sleep.
“It’s not like pins and needles, it’s a strange sensation.
“It sometimes feels like I have toothache in my leg. It gnaws away and it’s a little niggle that can last a few hours, or days, or weeks.
“Other times it feels like there’s a hot red poker in my joint or knee or leg, sometimes just for seconds.”
As well as the pain, Susan also has to deal with balance problems and often feels unsteady, especially on surfaces like loose gravel or snow. “A lot of it is being unsure on my feet,” she said. “If I catch my toe on something my body panics and thinks its going to fall.
“The worst is that my leg can give way and the fear is carrying a tray of food or tea – I’m aware that if my leg went, then I’d go and the tray would go!
“Running was always hard and now I know it’s because I don’t have a spring in my step or lightness in my feet, and that’s why I’ve always worn boots instead of shoes, for more support at the ankles. I hated running at school, I was always last and I didn’t realise there had been something at the back of it. Now I have peace of mind.”
Susan, a learning assistant who works with disabled children, had been living with CMT for years but it wasn’t until being diagnosed when she was 49 that she realised the cause of her difficulties.
“I was totally unaware at the time,” she said. “I had carpal tunnel syndrome and I woke up in pain and thought it was that, but it went right up my arm and wouldn’t release and I passed out with the pain.”
Her husband phoned for paramedics, who said her heart was fine but her organs were shaking. After a trip to hospital, followed by several GP visits and being referred to a consultant, she was finally given the news that she had CMT.
“I had never heard of it in my life,” she said.
“I got a letter about it and went online and read that it was incurable and it could progress and get worse. I started panicking and thought, ‘Where has this come from?’ “I saw a genetics lady in Glasgow who reckoned my mum maybe had it but she had died six months before. My husband used to joke that I walked like my mum and the geneticist said that often happens with people who have CMT.
“My mum got to 74 and she didn’t know and I thought I was lucky to have a mild case because it could have been much worse. The more severe cases must be pretty hard going because it can be very painful and uncomfortable.
“I’ve got to think that I’ve got this far. There’s nothing I don’t do – except run! You just adapt your way around it.
“My kids don’t want to get tested. They’re of the mind that I’m not that bad and I’ve got this far, so we reckon even if they’ve got it it’s a mild case again.”
Despite knowing there is no cure for CMT, Susan is grateful that she can still get by and is determined not to let it get in the way of anything that she wants to do. “I feel a lot happier knowing what it is,” she said. “My fear was always that I had MS and it was a relief to know it wasn’t that.
“The fact is I’ve got to this age, it’s not held me back but it’s put things into place. At the back of my mind I knew something wasn’t right but I couldn’t put my finger on it. Now I know why I have shaky hands and why I’m unsure on my feet – it’s fallen into place.”
To find out more about CMT, visit cmt.org.uk