Victims of rare disease 'would live longer with better care'

AROUND 150 sufferers of a muscle-wasting disease in the Lothians would increase their life expectancy by 50 per cent if standards of care were improved, campaigners have said.

Families affected by an "overlooked" form of muscular dystrophy lobbied MSPs in a bid to secure more cash for research and support for families.

They argue that victims of Duchenne's disease - who are unlikely to live beyond their 30th birthday - could enjoy an extra ten to 15 years if standards of care were improved in Scotland.

It is also hoped a long- running campaign to create a specialist centre for the illness can be moved forward by telling the new intake of MSPs about the need for improved care.

Campaigners for the charity Action Duchenne did point out the Scottish Government had made progress on some points previously raised, but they wanted to keep the pressure on to end the "postcode lottery" of care, adding that English patients have access to superior facilities.

The charity's chief executive Nick Catlin said: "This government is looking for every possible way to cut services, but to deprive the most needy children of transport is a cut too far. Now is the time for us to take action and challenge the government on their policies to provide support where it is needed most and affects real people's lives.

"Our campaign is urgent and we are delighted that so many of our families have made such a tremendous effort to support it."

The disease only affects boys, with the chances of it occurring about one in 3500. Diagnosis usually takes place around the age of three or four, with it attacking the legs first before working its way up the body.

It leaves sufferers in a wheelchair before their teenage years.

Those affected need extensive modifications to their homes, an area that families said had become more accessible thanks to progress at Holyrood in the past four years.

But now they want more testing and personal attention for patients, with the only centres in the UK offering this based in Newcastle and London.

"With our many supporters, including clinicians and experts, we have the chance to consign to history Duchenne's terrible wasting of young lives," Mr Catlin added. "It is time for the government to act and provide the funding to help develop treatments and provide the standards of care and support to which our young people have a right."

The campaign is being actively supported by city MSPs Jim Eadie and Colin Keir.

Mr Keir, the MSP for Edinburgh Western, said: "Meetings like these help raise awareness for the cause, that's what we are trying to do here. We all know about the financial pressures that exist but there are other ways to assist."It's important we can do everything we can to help."

'There's plenty more to do'

JOHN Miller got actively involved with the campaign to improve care and support for Duchenne's sufferers after the diagnosis of his grandson Lee several years ago.

Now 13, the wheelchair-bound youngster cannot expect to have the same standard of care as many of his European counterparts, or even those just south of the Border.

It is the Braidburn School pupil's plight that has inspired Mr Miller to join forces with Action Duchenne to impress upon politicians the importance of investment and awareness.

"Because of Lee's age there is an urgency about this for me," said the Blackford man.

"It's the type of disease where you could be here today, gone tomorrow.

"This is about keeping the pressure on. We've made great strides, but there is plenty more to do.

"If you look at countries like Denmark - they are miles ahead of us in terms of the care standards.

"Lee copes pretty well with it, I have to say. it's not easy for him at all."