Living And Coping With Cystic Fibrosis In The South Asian Community

1694 words - 7 pages

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, Zekry et al (2007) found that the occurrence of CF in Egyptian individuals is higher than originally suspected. The author concluded that further investigation in the field of CF is necessary to widen the awareness for many other countries. Differences between Asian CF phenotypes in comparison to Caucasian phenotypes have highlighted dissimilarities in a range of clinical outcomes. McCormick, Ogston, Sims and Mehta, (2005) compared the commonest genetic form of CF found in the White UK population with South Asian’s CF sufferers (Pakistani (34), Indian (10), Bangladeshi (2) and Asian other (1) via the UK CF Database. Samples of 50 “active” Asian CF patients (30 Male and 20 Female) with corresponding “active” White male/female were compared. “Active” indicating that the patients has clinical data stemming from 2002 three years before this study. Surprisingly, the authors found that Asian CF patients in particular females had worse clinical outcomes, predominantly in their lung function. Thus, suggesting that external determinate, such as sociocultural factors may be contributing to the severity and disease progression of CF within this group. On the contrary, Spencer, Venkataraman, Higgins, Stevenson and Weller, (1994)...

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