Athlone woman spearheads campaign to have Crohn's Disease recognised

Ann Marie Gavin jokes that Crohn's Disease was her early 21st birthday present. But her bubbly exterior belies a serious illness that has altered her lifestyle adversely since she was first diagnosed while in college some years ago. Now, the Fardrum resident is spearheading a letter writing campaign and online petition in a bid to have the digestive condition included in the Government Long Term Illness Scheme, a move that would mean all medication would be free irrespective of income and importantly, for sufferers to be acknowledged as essentially having a condition for life. "I get abdominal cramps and severe pain that I can wake up at night with. It can be so bad that I wouldn't be able stand up," Ann Marie said of the implications of the condition. "It has slowed me up a good bit, I suppose would be the summary of how it has affected me. I get tired an awful lot." The sickness erupted very suddenly, she recalls, coming just weeks after returning from a trip to China four years ago, while she was a student. "I was ok and then I got bloody diarrhoea very suddenly and I had to go to hospital. It all really started there and it took about six months to be actually diagnosed." Crohn's Disease is actually caused by an inflammation of digestive tract or gut. It varies in an acute or chronic form and can be characterised by flare ups and periods of remission. The severity of symptoms, the times without illness and the length of flare up vary from person to person and there is no identified cause for its occurrence. "It can come and go in severity but for me, it was on the severe side, more or less the whole way," the 25-year-old explained, adding that hospital stays and flareups meant she took an extra year to finish her Arts degree after being forced to spread out and defer her exams. Everything is day by day now for Ann Marie. However, what strikes you immediately about her is that she is not intent to wallow in her illness or be defined by it, looking to deal with the situation as best she can and improve things. "You just make adjustments. If I'm going to something I may have to leave early. With eating I wouldn't have much of an appetite and can feel sick after eating," the Fardrum resident stated. "Instead, you have smaller meals, eat more frequently and if you are tired you just have to take it easy." "My way of dealing with it, if I have pain or am tired, I try to do something to distract myself. If I lie down and think about it, it's just going to be worse. You can't just lie down and die." Her condition means she can have to take up to six drugs or more a day including steroids, which alleviate some symptoms, but she says that could double with a flare up and there can be side effects or they only work for a certain period. "Most people with Crohn's Disease will pay the €100 a month under the Drugs Payment Scheme because the drugs are so expensive, it certainly wouldn't be any less. I also have to get an injection once a fortnight, which would be out of reach only for the Drugs Payment scheme. That's the thing about Crohn's it's not just medication, you have consultants fees, GP fees, blood tests. It all mounts up." Some time ago, the Fardrum resident got involved in the Irish Society for Colitis and Crohn's Disease (ISCC), a support group she heaps praise on for their help dealing with the illness. "It's great, you have a question about anything and just to know there are others in same boat is a real help." It's estimated up to 15,000 people in Ireland suffer from Crohn's Disease and now Ann Marie is looking to garner support and lobby to have it included in the Long Term Illness Scheme by the Government. "It would mean free medication irrespective of income. It would be a basic right really, and to have the recognition of the illness and that it is long term and people might learn what it is," Ann Marie says. "I just want to get the word out there and find people with Crohn's and colitis and their families and friends to sign up to the petition. Over 217 have signed it since Sunday and that's just through word of mouth." "In England Gordon Brown has committed to extending their longterm illness list. If they can do it with no money why can't we? Their list is quite similar to here," she stressed. Clearly energised by the campaign, Ann Marie Gavin is hoping for success for Crohn's sufferers all over the country. Although she says the condition means you only make short term plans, she does have another longterm goal - a return to college. Her health battles have stimulated an interest in science, and she hopes to get that journey started in the years ahead. It can be accessed at http://www.ipetitions.com/petition/ibdforlongtermillness For further information check http://ibdforlongtermillness.weebly.com or email annmariegavin@googlemail.com