2. Cystic Fibrosis – The Facts CF is Ireland’s most common life threatening genetic disease Ireland has the highest rate of CF in the World 1 in 20 people carry the Cystic Fibrosis gene Where 2 carriers parent a child together, there is a 1 in 4 chance that the child will have the disease The average life expectancy of those with the disease is 37
3. How Cystic Fibrosis affects the body Cystic fibrosis affects the glands damaging many organs including the lungs, the pancreas, the digestive system and the reproductive system. It causes a thick sticky mucus to be produced, making it difficult for the body to clear bacteria which leads to a series of lung infections and inflammation which eventually leads to the damage of the lungs. CF can also make it difficult to digest and absorb adequate nutrients from food. Mucus blocks the duct of the pancreas, preventing enzymes from reaching the intestines to digest food. As a result, CF sufferers have to consume artificial enzymes with food to help them absorb adequate nutrition from their food. Sufferers must follow a demanding daily routine of physical therapy to keep the lungs free of congestion and infection.
4. From a practical point of view, more funding is needed: To fund medical and scientific research for a greater understanding of the disease To support specialist CF jobs in hospitals throughout Ireland To build much needed life-saving care units nationwide To fund campaigns to raise awareness of the disease To promote an increase in organ donors
5. Interview Brendan Mc Laughlin, CF patient I conducted an interview with Brendan McLaughlin from Stranorlar in order to gain some insight from someone who has the disease. I felt that this would be the best way to get a sense of their experiences with CF. “We’re forgotten about in Donegal. There’s a lack of resources. You feel isolated at times because nobody knows what you’re going through. We need to create a sense of community for CF patients” – Brendan McLaughlin.
6. Interview I also conducted an interview with parents of twins with Cystic Fibrosis as part of my research. During the interview, the issues of lack of interaction and lack of education of the disease were raised. The parents of the twins were concerned that their children felt alone at times, that other children at the school which they attended didn’t fully understand what they were experiencing which in turn made the twins feel a bit left out at times. “We would be concerned that the twins feel excluded at times, as they are the only children at the school with CF so it would be good if there was a way in which to get other more involved with and more educated about the disease. We would like to show the twins that they are not the only ones going through what they are going through.”
7. “There has been a lot of negativity about CF in the media recently and we at CFAI are very much trying to highlight the positive aspects of people living with Cystic Fibrosis, their accomplishments, achievements and determination to live life to the fullest”. - Alica May, Services Manager at Cystic Fibrosis Ireland (comment taken from personal email correspondence)
