The role of religious leaders and faith organisations in haemoglobinopathies: a review

A literature search was conducted to find studies published between 1990–2008 aimed at examining the influence of religious leaders and faith organisations in health, with particular reference to haemoglobinopathies.Eleven studies were reviewed covering a variety of health interventions. The findings suggest that involvement of religious leaders and faith organisations in health related interventions improved the level of acceptance, participation and positive health outcomes within the faith communities.Religious leaders and faith organisations have the potential to influence health education, health promotion and positive health outcomes amongst members of their faith community. They also provide potential access to at-risk populations for increasing awareness about SCD, encouraging health service utilization and ethnic blood donor drives.Haemoglobinopathies are a group of inherited disorders of haemoglobin with over 800 recognised types. The two most important clinical syndromes are sickle cell disease and thalassaemia. Thalassaemia is due to reduced production of the affected haemoglobin chains and therefore referred to either as alpha or beta thalassaemia. Beta thalassaemia major is associated with severe anaemia and therefore dependent on blood transfusion, while other forms present a variable degree of severity with anaemia depending on the type of genetic mutation. Sickle cell disease (SCD) on the other hand is due to a single amino acid substitution of the beta chain of haemoglobin that results in the formation of abnormal haemoglobin. Among the most common SCD syndromes are sickle cell anaemia (Homozygous SS), double heterozygote such as sickle haemoglobin C disease (SC) and sickle β thalassaemia disease (Sβ) [1,2].The World Health Organisation estimates that over 300,000 babies with severe forms of these disorders are born worldwide each year making it the most prevalent inherited disease of mankind [1]. In the UK, SCD is particularly common among people