National charity founder speaks about life with MS

A WOMAN with multiple sclerosis (MS), who started a national charity almost two decades ago, has spoken about her lifelong condition as the search for a cure continues.

Letchworth GC resident Chris Jones was 29 when she was diagnosed with MS, a disease with symptoms such as problems with walking, vision, bladder and bowel function, as well as pain, altered sensations and fatigue.

Shocked by the lack of support available, Chris and her friend Jill Holt set up the Multiple Sclerosis Trust in 1993, which is based at the Spirella Building in Letchworth GC.

“You don’t expect to be told you’ve got something incredibly disabling and progressive when you are 29,” said Chris, who retired from her chief executive role at the charity four years ago and is now a trustee.

“I felt very isolated because MS was relatively uncommon. I didn’t feel I had anybody I could turn to for advice.

“It’s a condition of the nervous system and there’s a feeling of being out of control. I was just told I’d have to learn to live with it and that there was nothing that could be done.”

After meeting other MS sufferers, Chris came to the conclusion that the support “wasn’t good enough” and set up the MS Trust in her hometown.

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The charity now runs a free information service available to anyone affected by MS, as well as running courses at The Priory in Hitchin for nurses wishing to specialise in the condition.

Chris said: “There is no shortage of information now. Search online for ‘multiple sclerosis’ and you get 28 million results. But this can be just as isolating, not knowing what’s true or what’s relevant to you.

“When I was diagnosed, I wanted an expert at the end of the phone who could answer my questions, as and when I was ready to ask them. For people with MS today, this is what the MS Trust provides - through a free phone number and also online.”

Regarding finding the cause and a cure, the 60-year-old added: “I think we’re getting closer all the time and there’s a great deal of hope in stem cell research and other methods as well. But we’re still trying to find the cause so we’re still some way from a cure.”

Chris also stressed the need for funding to continue the work done by the MS Trust, with the free enquiry service typically costing �200 a day to run.

As part of a fundraising appeal, Chris will be broadcast on BBC Radio 4 at 7.55am on Sunday, with the show repeated at 9.26pm.

The MS Trust is also looking for people to get involved in its ‘My Garden for MS’ campaign, which runs throughout the summer, encouraging people to hold their own garden event.

For more information or support, call the MS Trust on 0800 032 3839 or visit www.mstrust.org.uk

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