These were the findings of a new study by Myrtle Perera (Marga Institute, Sri Lanka), David Molyneux (Liverpool School of Tropical Medicine, UK) and colleagues in the recently launched open-access journal PLoS Neglected Tropical Diseases.
Lymphatic filariasis (LF) is a tropical parasitic disease transmitted by mosquitoes that causes extreme swelling of the limbs and male genitals. Despite recent successes in preventing the transmission of LF, say the authors, some 40 million people worldwide who already have the disease have been largely neglected by public health policy makers.
If effective disease control interventions are to be successfully implemented, the researchers propose, the full extent of the disability must be understood. In order to inform future interventions and policy measures, the study sought a greater understanding of the consequences of the disease for individuals and their families, the barriers they face to accessing care, and their coping strategies.
The researchers conducted in-depth interviews with 60 people with LF in southern Sri Lanka. The participants described how the social isolation from stigma caused emotional distress and delayed diagnosis and treatment. Free treatment services at government clinics were avoided because the participants’ condition would be identifiable in public.
One participant said: “I am mentally broken down and do not know how long I can live like this, shunned and rejected and confined to this house.”
While many aspects of the disease such as risk of infection and access to treatment facilities varied according to economic status, loss of income due to the condition was reported by all households in the sample, across all income levels. Households that were already relying on low incomes before infection were pushed into near destitution.
The authors call for an expansion of LF control programs beyond measures to break the transmission of disease. “Even if the LF elimination program is successful in arresting transmission of the disease so that there are no new cases,” they say, “hundreds of thousands of people in Sri Lanka will continue to suffer clinical manifestations of the disease and will remain trapped in poverty. The affected households will need help and support for many years despite transmission having been arrested.”
CITATION: Perera M, Whitehead M, Molyneux D, Weerasooriya M, Gunatilleke G (2007) Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis. PLoS Negl Trop Dis 1(2): e128. doi:10.1371/journal.pntd.0000128
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