Topic > Living and Coping with Cystic Fibrosis in the South…

A widely accepted Caucasian disease has since changed; as cases of its existence are appearing in the South Asian population (Orenstein, Rosenstein, & Stern, 2000). First discovered in 1989, cystic fibrosis (CF) is a genetically predetermined condition, its presence is lifelong and highly complex, which is why many fibrosis sufferers and families develop various mechanisms to adapt to the condition (Tippingemail , Scholes, Cox, 2010 ). Cystic fibrosis causes the body to develop thick, sticky mucus that clogs the lungs and affects other organs in the body, mainly the pancreas. If left untreated, the mucus layer turns into a chronic infection that can be harmful. The pancreas of a patient suffering from cystic fibrosis is the most vulnerable, once the mucus has reached this organ, it prevents digestive enzymes from reaching the intestine which helps absorb food, thus affecting nearby organs (Davies, Alton and Bush, 2007). There are currently 9,000 people diagnosed with cystic fibrosis in England (CF Trust, 2011). It has been estimated that in the UK alone there is 1 in 10,000 South Asian sufferers (Kabra, Kabra, Lodha, Ghosh, Kapil et al, 2003; McCormick, Green, Mehta, 2002). Previous literature based on research focused on people with CF and their families covers some of the experience of living with the disease but shows some important gaps; none specifically targeted South Asian individuals. This is also the case on a cultural level; The limited availability of research on cystic fibrosis has prompted scientists to devote more attention to this area. For example, information on CF in Egypt is very limited; Firstly, cystic fibrosis is believed to rarely occur as there have not been a sufficient number of known cases of cystic fibrosis. Naguib, Schrijver, Gardner, Pique, Doss, Ze......middle of paper......fear of rejection (Gray, 2000). If parents of CF patients don't fully understand the condition, 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 conducted in the area of ​​CF in non-Caucasian groups have focused only on screening; none examined their lived experience or explored the impact of CF on their personal lives. This study aims to fill the gap in cystic fibrosis research by focusing on understanding the lived experience of non-Caucasian cystic fibrosis patients. Likewise, this document aims to; 1-Understand the lived experience of South Asian CF patients 2-Identify the non-medical reasons why this difference occurs 3-Identify understanding the mechanisms that CF patients implement in coping with their diagnosis to all your life.