Sufferers' Quality Of Life Should Be Priority - Press & Journal

by Paul Gallacher, Press & Journal

Quality of life is as important for sufferers of a rare form of muscular dystrophy as research into the disease, the Scottish Parliament heard last night.

MSPs debated a motion on Duchenne Muscular Dystrophy, a progressive genetic muscle-wasting disease which affects about 2,500 people in the UK, nearly all of them boys, and for which there is no cure.

Sufferers spend much of their lives in wheelchairs and die in their late teens or early 20s unless they can be given treatment.

The motion, in the name of Stirling MSP Sylvia Jackson, expressed concern that sufferers in Scotland were dying on average 10 years earlier than those in England and called for an improvement in their "life expectancy and experiences" to be a priority for the Scottish Executive.

The issue was brought to Ms Jackson's attention by the parents of Stirling boy Arryn Widd, who has DMD, but she was unable to attend last night's debate, owing to illness.

Banff and Buchan MSP Stewart Stevenson said sufferers should have lives of humour, excitement and participation in activity, like any of their peers and should fit as much experience as possible into their short lifespans.

Highlands and Islands Green MSP Eleanor Scott, a paediatrician, spoke of a boy she knew with DMD who was eventually able to lead a fulfilling life.

North-East Conservative MSP Nanette Milne raised issues about the housing and educational needs of DMD sufferers and echoed recent concerns about wheelchair funding, after a review of the wheelchair service earlier this week proposed its resources should be doubled within three years.

Deputy Health Minister Lewis Macdonald said the executive wanted to help people with the condition lead the best possible lives, and added funding had been approved for clinical geneticist and physiotherapist posts and recommendations of the wheelchair review would be given consideration.

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