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  • Essay / Living and Coping with Cystic Fibrosis in the South...

    A widely accepted Caucasian disease has since changed; because cases of its existence appear in the South Asian population (Orenstein, Rosenstein and Stern, 2000). First discovered in 1989, cystic fibrosis (CF) is a genetically predetermined disease, its presence is permanent and very complex, which is why many CF patients and their families develop various mechanisms in order to adapt to disease (Tippingemail, Scholes, Cox, 2010). ). Cystic fibrosis causes the development of thick, sticky mucus that clogs the lungs and affects other organs in the body, primarily the pancreas. The mucus layer, if left untreated, turns into a chronic infection which can be detrimental. The pancreas of a CF patient is the most vulnerable: once mucus reaches this organ, it prevents digestive enzymes from reaching the intestines, making it easier to absorb food, thereby affecting neighboring organs (Davies, Alton and Bush, 2007). Currently, 9,000 people have been diagnosed with cystic fibrosis in England (CF Trust, 2011). It is estimated that in the UK alone, 1 in 10,000 South Asian people are affected (Kabra, Kabra, Lodha, Ghosh, Kapil et al, 2003; McCormick, Green, Mehta, 2002). The literature based on previous research and focused on people with cystic fibrosis and their families covers some of the experience of living with the disease, but has major gaps; none have specifically targeted South Asian individuals. On an intercultural level, this is also the case; The limited availability of CF research has prompted scientists to devote more attention to this area. For example, information regarding cystic fibrosis in Egypt is very limited; First, CF is thought to be uncommon because there have not been a sufficient number of known CF cases. Naguib, Schrijver, Gardner, Pique, Doss, Ze...... middle of paper ......fear of rejection (Gray, 2000). If parents of people with cystic fibrosis don't fully understand the disease, how can they successfully explain it to other people? Duff (2003) highlights the need for further investigation in this area and suggests that to date, studies in the area of ​​cystic fibrosis in non-Caucasian groups have barely focused on screening; none examined the lived experience or explored the impact of CF on one's personal life. This study aims to fill gaps in CF research by focusing on understanding the lived experience of non-Caucasian people with CF. Similarly, this article aims to: 1-Understand the lived experience of South Asian CF patients 2-Identify the non-medical reasons why this difference occurs 3-Identify an understanding of the mechanisms that CF patients experience implemented to cope with their diagnosis throughout their life.