Conference will put rare illness in the spotlight
5:30am Wednesday 26th March 2014 in By Marion Sauvebois
A RARE neurological condition affecting tens of thousands of people in the UK but which continues to puzzle medical experts will be placed in the spotlight at a national forum in Swindon next month.
CMT UK, a charity dedicated to supporting people affected by the inherited disorder Charcot-Marie-Tooth has chosen the town’s Hilton Hotel to hold its 26th annual conference on April 5.
CMT is a progressive condition which damages the nerves controlling the muscles and relaying sensory information, such as the sense of touch, from the limbs to the brain.
People with the long-term illness experience muscle weakness, often have an awkward gait and curled toes. This can lead to numbness and pain.
These symptoms slowly get worse as sensory and motor nerves deteriorate with age.
It is estimated around 23,000 people may have CMT nationwide.
Some 170 members with the condition will gather to hear about the charity’s plans to increase its income to £2m over the next five years, meet its first ever fundraising manager who was recently appointed and hear the latest findings from researchers at the UCL Institute of Neurology.
Among them will be Eileen Sealey, of Moredon, who was diagnosed with the disorder 64 years ago at the age of eight after her toes began pointing inward.
She underwent courses of physiotherapy for years to relieve symptoms, aid her mobility and increase her independence and quality of life and is now determined to raise awareness of CMT and highlight the importance of funding new research into a cure.
“I started walking pigeon-toed; that’s when it was first noticed,” she said. “Mostly it affects your arms and legs and hand movements. For instance knitting at the moment is difficult and I feel like I am knitting with crowbars. My muscles seem to lock down.
“I worked as a clerk-typist so the condition didn’t stop me. But you have to learn to live with it and make adjustments. I had to have intense physiotherapy for a number of years to make my muscles work. The less you move the more it deteriorates and you have to keep moving as much as you can.”
As the illness is inherited, Eileen made the decision not to have children to avoid the risk of passing it on to her offspring.
“The only way to stop it at the moment is virtually not to have a family,” she said.
To find out more about the conference contact Karen Butcher on 01202 432048 or email firstname.lastname@example.org.