Yvonne takes disease fight to Parliament
MOTHERWELL mum Yvonne Murray-Mooney has been appointed treasurer of the new Cross Party Group in the Scottish Parliament on Coeliac Disease and Dermatitis Herpetiformis.
The group will seek to improve the quality of life of people living with the condition with the main aims of speeding up diagnosis by educating GPs, raising awareness of the disease and making gluten free food more widely available.
Coeliac disease is a life-long autoimmune disease caused by intolerance to gluten, which causes an inflammation of the small intestine. Damage to the small intestine will occur each time gluten is consumed. Gluten is a protein found in wheat, rye and barley.
It is a genetic disease and studies show that if a family member has coeliac disease there is an increased risk of one in 103 to other family members.
Dermatitis herpetiformis is a skin disease closely associated with coeliac disease.
Yvonne's daughter, Laura, has coeliac disease and last August the former Olympic athlete was appointed group organiser for the Clyde Valley branch of Coeliac UK which now has 450 members.
Events such as a gluten-free breakfast and debate in February and an exhibition in May convinced MSPs that a cross party group should be set up.
Among the most supportive MSPs was Margo MacDonald,an Independent MSP for Lothians, who has a granddaughter with coeliac disease.
Yvonne said: "Getting the group set up has been a lot of hard work and was a real team effort, but even we are a little surprised at how quickly it has come about.
"We need to get the diagnosis procedure speeded up and that means improving GP training so they know what to look out for. Many people can go through their whole life without knowing they have it.
"We have seen 450 people join the Clyde Valley branch since last August which shows the number of people who are being affected by the disease, but up to 43,000 across Scotland remain undiagnosed.
"Laura was very ill before she was diagnosed so it is frightening to think that there are other children and adults being left to suffer what is a very painful condition.
"The other problem is the cost and availability of food. Supermarkets are starting to offer more choice but must bring the price of gluten-free food in line with the rest of their stock, while we'd also like to see a gluten-free option in restaurants as that is very hard to get.
"Coeliac UK will also be launching a hospital food campaign as very often in that environment cross-contamination can occur and people with coeliac disease come out sicker than when then they went in.
"However, everything seems to be heading in the right direction and it is good to know that you can effect change."
Coeliac UK chief executive Sarah Sleet said: "One in 100 people is estimated to suffer from coeliac disease in the UK; however, we estimate around 43,000 people in Scotland are left undiagnosed. Jim Tolson MSP and Margo MacDonald MSP have done a great job in putting coeliac disease high up on the political agenda and we very much look forward to working with the Cross Party Group in the future."
Group convener Jim Tolson said: "I aim to ensure that the issues of raising awareness, improving diagnosis and improving access to gluten-free food will be vigorously followed in the Scottish Parliament."
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Weather for Motherwell, Scotland
Thursday 24 May 2012
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