Multiple Sclerosis is the most common nerve disorder among young adults. It's incurable.
And the highest incidence of MS on the British mainland is in Cornwall.
Yet there is only one specialist nurse helping deal with the condition in the whole of the county - and even that job was due to have been scrapped this month.
It was given a temporary reprieve but in the main MS sufferers have had to turn to help from the voluntary sector, rather than the NHS.
However now the volunteers say their work is being undermined by the rocketing cost of paying for inspections by the Healthcare Commission.
A two mile sky-dive offered MS sufferer Sue Keystone a short-lived sense of freedom.
"You go backwards and forwards across the sky. It's an absolutely exhilarating feeling, it's wonderful", she recalls.
She came down to earth to the confines of her wheelchair, but knowing she had raised sponsorship money towards her dream - a dedicated MS therapy centre for Cornwall.
Tainted
But the dream has been tainted, because of the extra money needed to meet the costs of annual inspections once it is operational.
"I'm absolutely incensed that they can even think about doing this and I mean we are providing and fulfilling a need, a huge need, that's lacking in the NHS that the government hasn't dealt with and yet they're choosing to make money out of us, which is ludicrous," she says.
The new centre will be entirely funded by donations.
But the money raised will also have to pay for visits by the government's health watchdog, the Healthcare Commission.
This rankles with Dr Derek Murphy, chairman of the Merlin Project which is spearheading the campaign for the new centre.
"Whereas the people of Cornwall are absolutely marvellous and their generosity I think they may think twice if they find that the funds that they are contributing to us, at least a large chunk of those funds, is in fact going to be allocated to a government department," he says.
MPs' support
Cornwall's five Liberal Democrat MPs have tabled a Commons motion deploring the charges.
"To have to raise this sum of money and give it away on inspection, is just totally heart-breaking"
"I think we all know that building the building is one thing, the capital cost," says Colin Breed the Liberal Democrat MP for South East Cornwall, "but actually making this work once the centre is open is a different challenge.
"To have to raise this sum of money and give it away on inspection, is just totally heart-breaking for those that want to raise the money and just stupid in terms of the government who should be supporting this sort of charitable exercise," he insists.
Far from treatment
At the moment the nearest MS therapy centre to Cornwall is in Exeter. It's too far for many MS sufferers. The journey would be so debilitating any gain would be negated.
Patients visiting the Exeter therapy centre can take advantage of its oxygen chamber.
Not every MS sufferer benefits from high dosage oxygen, but about 70% do.
The chamber doubles normal air pressure to the equivalent of being 10 metres under water.
"You know, its a little bit like the Heineken effect, it reaches the parts that other air can't reach by going in the chamber, keeping pressured oxygen going up into the little tiny capillaries in the brain," said Trevor Butcher one of the centre's patients.
"Why has Japan got 800 and the Soviet Union has got over 2,000 of these chambers and they're using it for all sorts of ailments in different ways, people finding benefits from it.
It is a British invention.
There are plenty of other treatments on offer including physiotherapy. But while the inspection charges may be rising, there is no guarantee the fund-raising will keep pace.
"We have to raise £60,000 per annum through charitable donations and out of that we're having to pay £1,500 for regulation," said Paul O'Hara, the chairman of the Exeter MS Therapy Centre.
"That is going to triple over the next two years and that's money that could be spent on therapies. We think it's grossly unfair and obviously what we want to do is get that amount reduced or in fact completely annulled."
The Healthcare Commission says it is currently consulting on the scale of fees for next year.
The MS therapy centres say they weren't invited to take part.
"It's totally wrong isn't it really that these people are already with an ailment there's no cure for and then people who are helping them are having to provide money not for the actual centres but for a government department," says Peter Owens, chairman of MS National Therapy Centres.
The fund-raising will continue both to keep Exeter up and running and to keep alive the dream of MS sufferers in Cornwall.
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