Living and Coping with Cystic Fibrosis in the South Asian Community

A widely accepted Caucasian disease has since changed; as cases of its existence are appearing in the South Asian Population (Orenstein, Rosenstein and Stern, 2000). First discovered in 1989, Cystic Fibrosis (CF) is a genetically predetermined condition, its presences is lifelong and highly complex, which is why many CF sufferers and families develop various mechanisms in order to adapt to the condition (Tippingemail, Scholes, Cox, 2010). Cystic Fibrosis causes the body to develop thick, sticky mucus which clogs the lungs and affects other organs in the body, mainly the pancreas. The layer of mucus if untreated develops in to a chronic infection which can be detrimental. The pancreas of a CF patient is most vulnerable, once the mucus has reached this organ, it halts digestive enzymes from reaching the intestines which aid in absorbing food, therefore affecting nearby organs (Davies, Alton, and Bush, 2007). Currently there are 9,000 people diagnosed with CF in England (CF Trust, 2011). It has been estimated that there is 1 in 10,000 South Asian sufferers in the UK alone (Kabra, Kabra, Lodha, Ghosh, Kapil et al, 2003; McCormick, Green, Mehta, 2002). Prior research-based literature that focuses on people with CF and their families covers some of the experience of living with the disease but displays some major gaps; none has specifically targeted South Asian individuals. Cross culturally this is also the case; the limited availability of CF research has influenced scientists to devote more attention in this area. For instance, information in regards to CF in Egypt is very limited; firstly CF has been believed to occur infrequently as there has not been a sufficient amount of known CF cases. Naguib, Schrijver, Gardner, Pique, Doss, Ze...

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...the fear of rejection (Gray, 2000). If parents of CF sufferers do not fully understand the condition, how can they successfully explain the condition to other people? Duff, (2003) highlights the needs for further investigation in this area and suggests that to date studies carried out in the area of CF in non- Caucasian groups have only just focused on screening; none have examined the lived experience or explored how CF has impacted on their personal lives. This study aims to close the gap in CF research by focusing on understanding the lived experience of non-Caucasian CF sufferer. In similar respect, this paper aims to; 1-Understand the lived experience of South Asian CF patients 2-Identify non-medical reasons as to why this difference occurs 3-Identify an understanding of the mechanisms CF patients implement when coping with their diagnosis throughout life.