More MS news articles for April 2001

Let's do it the doubly hard way

Meet an MS sufferer confident of completing the 26 miles

http://www.thetimes.co.uk/article/0,,687-117072,00.html

When every day is a huge challenge in itself, completing the 26 miles and 385 yards of the London Marathon must be an undertaking of epic proportions.

Karmel Potts, 28, from Sawley in Nottinghamshire, was diagnosed with multiple sclerosis (MS) in October 1998. When she heard that the MS Society was the official charity of this year's marathon she had, as she puts it, a "crazy idea" - she would compete in the race and raise both money and awareness for the society.

Potts has the relapsing and remitting form of MS, which, when in remission, allows her to lead a relatively normal life. Nevertheless, running the marathon's distance is simply not feasible. Instead she is walking it, with her friend Michael Frost, as one of the 750-strong MS Superstars team, a number of whom are MS sufferers. It will be an intensely arduous task.

"I always used to watch the marathon on television when I was young, and often thought I'd like to do it when I was older - now I've got the chance," she says. Potts started training last September and recently completed a 20-mile walk, so she is quietly confident that she can complete the course and she is determined to run the last stretch. "I'm really excited and it will be a very emotional moment when I turn the corner and see Buckingham Palace," she says.

MS, for which no cause or cure is known, is the most common neurological disorder among young adults, affecting about 85,000 people in Britain. Normally diagnosed between the ages of 20 and 40, it affects more women than men. There are four types of MS and the symptoms can vary from the relatively minor, such as numbness and blurred vision, to severe pain, heavily restricted mobility and speech problems.

Fatigue is a fact of life for MS sufferers. Fortunately for Potts, her bosses at East Midlands Electricity are understanding and send her home if she needs a rest.

"With MS, you have to know your limits," she says. "You do get fatigued and your immune system is poor, so you pick up colds and anything else that's going round the office. Every day is a challenge, but you have to be positive. When I was diagnosed, I felt awful, I thought: 'I'm 25 and my life's over.' But now I'm starting to realise that you just have to get on with it."

Although there is no cure for MS, there is one drug, Beta Interferon, which is believed to slow the symptoms. Yet it is not available on the NHS because of its cost. Alistair Hignell, the former England rugby international and BBC radio commentator, pays Pounds 11,200 a year privately for Beta Interferon and, along with the MS Society, is campaigning for the drug's wide use.

"The National Institute of Clinical Excellence has said that, the 'modest clinical benefits are outweighed by the cost'," he says. "It is not a cure, but I believe it slows things down and the psychological benefit, to feel I'm doing something about it, is huge. You can get it everywhere else in the world and I think it's a bit of a scandal that it's not available on the NHS."

Hignell, 45, was diagnosed two years ago and has secondary progressive MS, which causes gradually reduced mobility. He can still drive, but his range of mobility is threatened. Although he is captain of the MS Superstars, walking the course is beyond him. "A long walk from the Stade de France to the station was right at the edge of my range," he says. "MS hasn't affected my speech or eyesight, so I've been quite lucky. But there are times when I feel completely shattered. I find it amazing that anyone with MS could contemplate doing the marathon."

Hignell will be there, though, in a cheerleading capacity and wrapping his team in foil blankets as they cross the line, all the while marvelling at some remarkable achievements.
 
 
Copyright 2001 Times Newspapers Ltd.