Ely woman raises awareness of a rare genetic disorder
- Credit: Archant
An Ely woman is helping raise awareness of a little known health condition that causes uncontrollable pain, chronic fatigue and deformities in the hands, lower legs and feet.
Alison Fletcher was diagnosed in her twenties although they suspected problems when she was young.
Former Girls Aloud singer and Britain’s Got Talent judge, Cheryl Tweedy, has Tweeted about it as her friend’s young son suffers with the rare disorder.
Throughout September, CMT Awareness is raising the profile of the genetic, neurological disorder, called Charcot-Marie-Tooth (CMT), that can cause a raft of health issues leading to balance problems and falls.
Alison Fletcher, 43, from Ely, said: “I was born with CMT although I wasn’t properly diagnosed until my mid-twenties after researching the condition on the internet and then being referred the National Hospital for Neurology and Neurosurgery in Queen Square, London.
“I was quite floppy as a baby and when I got older, I had very high arches and walked on the sides of my feet.
“I even had operations to release my Achilles tendons to straighten them out at 10 years old and then again at 14 years old.
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“The first operation was not a great success, but with the second one, I ended up with both legs in casts for six weeks and it worked much better, “I was able to find shoes that fitted, and my walking improved. There was still no mention of CMT at all.
“School wasn’t easy, I got bullied because of the way I walked and then my working life got difficult too.
“I was sacked in one of my first roles because I was too slow and my handwriting wasn’t very good, but unbeknown to me CMT had affected my hands.
“In my early twenties, I woke up and had a lack of feeling in my feet. The numbness only got worse and my balance was getting poorer.
“One specialist said it was my myelin that was affected so I put it in the search engine, found CMT and the symptoms matched mine exactly.
“I saw my GP who referred me to a neurologist who eventually diagnosed me.
“I would say my CMT has got significantly worse now I’m in my forties. I now rely quite heavily on a walker and a mobility scooter.
“However, I haven’t given up hope of walking independently again and see a personal trainer, who I think has helped because during a recent hospital visit they said I seemed stronger.
“I now work at the Jobcentre and they are brilliant with me; helping with my workload, ensuring I don’t get too tired and am taking enough breaks; always asking how they can help.”
It is thought 23,000 people in the UK have Charcot-Marie-Tooth, named after the three scientists who discovered it.
Steadily progressive, it causes muscle weakness and wasting in the lower legs and feet, leading to problems like hammer toes, restricted mobility, and uncontrollable pain.
The hands and fingers are also affected, making tasks needing fine motor skills, like fastening shoe laces and buttons, very difficult.