LF: Lack of sex, role reversal and social stigma

That’s what sufferers of lymphatic filariasis go through every day.

A recent review looked at all of the research into the experiences of people living with  lymphatic filariasis (LF), or elephantiasis, and analysed the complexities of daily life faced by people living with LF-related disability.

LF is caused by infectious nematode-carrying mosquitoes biting a person, depositing parasites on the skin which get inside the body, grow and spread into part of the immune system called lymph tissue.

WHO defines disability in general as “a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives”, as it is a result of the disease and impairment themselves, but also disruptions caused to lifestyle and standard of living.

120 million people worldwide live with the burden of LF,  40 million of whom live with chronic disabling effects as a result of this parasitic disease, according to WHO.

WHO regards LF as the leading cause of physical disability in the world.

Researchers reporting in the journal PLOS Neglected Diseases reviewed qualitative data from the sufferers themselves and this is what they found.

The authors conclude that the Global Programme to Eliminate LF, which was created with the aim of eliminating LF by 2020 mainly through mass drug administration, has a lot of work to do as millions remain burdened by LF-related disabilities.

They suggest that the interventions put in to target LF could learn from previous measures put into action to target leprosy which have been more effective.

Adopting these more detailed regulations would involve annual reporting of medical intervention and rehabilitation programs. These kinds of measures are thought to help progress in reducing the LF burden, particularly in alleviating suffering of patients.

The authors also suggest that the language WHO and the Global Programme to Eliminate LF use over the coming years is crucial as the use of phrases such as “successful elimination programmes” would mislead people into thinking enough was being done, making it difficult to advocate new management programs.

This type of language would also misrepresent the experiences of sufferers.

The findings confirm the need for the Global Programme to Eliminate Lymphatic Filariasis to support morbidity management activities that would support the millions of people who remain impoverished, psychologically damaged, and unable to complete daily activities of necessity.

Photos courtesy of NYTimes, Flickr, Handicap International, iConsGSK, WeHaitians and Elephantitis

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