SARA Byrne has had three major surgeries to bring her inflammatory bowel disease (IBD) under control, but she has reason to be hopeful.
For one thing, she is pleased that there is now a lot more awareness about the condition than there was when she was first diagnosed with Crohn’s disease in 2005.
She was doing her Junior Cert at the time and she believes exam stress brought on the severe stomach cramps that put her completely off her food. She lost 19kg.
Her other most severe attacks also happened at times of exam stress, but after having significant surgery in 2013, the last of three, she now has good health.
She avoids dairy products and also takes “quite strong drugs”, as she puts it, to stay well, but life is good.
Now the 27-year-old accountant is hoping that life for all IBD sufferers will improve following news of the first comprehensive study of the disease in Ireland.
Research to identify genetic markers that can help diagnose IBD is being carried out by Irish company Genomics Medicine Ireland in collaboration with St Vincent’s Hospital, Tallaght Hospital and UCD Clinical Research Centre.
The study also aims to predict the severity of the disease and identify individualised treatment for the 20,000 Irish people who are diagnosed with IBD.
There are two major forms of IBD: Crohn’s disease and ulcerative colitis. Both are life-long conditions for which there is no known cause or cure. Ireland has one of the highest rates of colitis in the world.
Sara Byrne hopes that studies such as this will help to identify a cure: “The more we increase our understanding of IBD through research, the better chance we have of finding that cure or at least improving the treatments available so that if you are living with IBD, its impact on your day-to-day life is minimised.
“It’s really important that as many IBD patients as possible participate in this study to help us on this journey,” she told Feelgood.
International studies have already linked some genes to the development of IBD but that is only part of the story. There are many genetic and environmental risk factors yet to be identified.
Professor Deirdre McNamara, consultant gastroenterologist at Tallaght Hospital, said: “This study will enable us to gain a comprehensive understanding of the interactions between genes, environment, biology and the disease.”
She said IBD had evolved into a global disease, with over 2.5 million sufferers in Europe and one million in the US.
“Irish IBD patients have an opportunity to contribute to potentially life-changing research that will benefit not just our patients here in Ireland but people with IBD throughout the world,” she said.
Sean Ennis, chief scientific officer at Genomics Medicine Ireland, said the study would examine how changes in our genetics contribute to the risk of getting IBD, how it progresses and how it responds to treatment.
Professor Glen Doherty, consultant gastroenterologist at St Vincent’s University Hospital, said: “As we gain a better understanding of the role of genetics in IBD and in an individual’s response to different drug treatments, it will enable a more personalised approach to the treatment of the condition.”
Meanwhile, Sara Byrne advises others who may have been recently diagnosed or who feel they may have IBD not to go online looking for dietary advice.
“Not a single person has the same story,” she says. She advises people to work closely with a dietician to establish if particular foods aggravate the condition.
For Sara, food is one of the great joys in life and while she follows a very healthy diet, kickstarted in the morning with porridge topped with almond butter, bananas and cinnamon, she has a sweet tooth and a bar of chocolate is also a regular on the daily menu.
Her secret is to eat little and often and also to do stress-busting things she enjoys, such as singing in the Line-Up Choir in Harold’s Cross in Dublin.
“You can’t be stressed singing 80s tunes!”
* If you are an IBD patient at either St Vincent’s University Hospital or Tallaght Hospital, you can take part in the study. Anybody interested should talk to their consultant.
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