Onchocercal skin disease

Onchocerciasis, or river blindness, has plagued millions (mostly in Africa) for centuries. Its common name portrays the common perception of the disease and its public health impact - it causes severe eye problems including permanent blindness, and can shorten life expectancy by up to 15 years. But in 1990, another devastating impact of this disease was brought to global attention.

New knowledge and awareness was generated about skin disease in onchocercal infection. Biomedical and clinical aspects of the disease were quantified, and for the first time, the socio-cultural aspects of onchocercal skin disease were understood.

Biomedical aspects of skin disease

  • incessant itching
  • bleeding and ulceration of skin
  • secondary infections
  • disfiguring skin lesions
  • alterations of skin pigmentation
  • rashes
  • bone pain
  • headache
  • fatigue

Socio-cultural aspects of skin disease

These aspects are particularly relevant to women

  • people worried that skin disease would affect their ability to interact socially
  • people worried that they would never marry
  • they feared being ostracized they had low self-esteem
  • they experienced social isolation
  • some considered suicide
  • children were more likely to be distracted in school due to constant itching

This new knowledge contributed to, and reinforced plans to eliminate onchocerciasis in West Africa based on distribution of the drug ivermectin. It changed the perception and actions of donors and disease control personnel, and made it easier for health workers to engage and involve communities in treatment programmes.

WHAT WAS TDR ROLE?

TDR played a unique and leading role, enabling scientists to examine aspects of disease beyond the usual biomedical ones. TDR:

  • Engaged social scientists, biomedical scientists, and other cross-disciplinary groups that had never previously worked together
  • Initiated and supported studies in communities to uncover feelings and concerns about skin disease
  • Encouraged involvement from governments, NGOs, industry, and academia
  • Galvanized control programmes, international agencies, researchers and public health workers
  • Mobilized and partially funded an international network of researchers.

This pioneering work is now bearing fruit in many other areas. (eg. work is being carried out on the social stigma attached to leprosy and lymphatic filariasis, and on a wide variety of psychosocial, socioeconomic, and behavioural aspects of TDR target diseases).

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