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Preventing Disability from Disfiguring Lymphedema

Lymphatic filariasis is one of the world’s leading causes of permanent and long-term disability. About 120 million people are affected worldwide, and 40 million people are incapacitated and disfigured by this parasitic disease that is transmitted by mosquitoes. Although transmission of this neglected tropical disease can be prevented, lymphatic filariasis is currently endemic in 81 countries and territories, and over 1.3 billion people are at risk. To address this threat, CDC has partnered with several organizations to interrupt transmission and prevent disability in those who already have the disease.

Lymphedema is a disfiguring condition that causes swelling of the limb and changes in the skin, and it is often a physically deforming consequence of lymphatic filariasis. There is no treatment available for lymphedema, but patients can improve with some basic daily management such as washing of the legs and feet to prevent infection of wounds. Lymphedema patients are more vulnerable to infections, similar to patients with advanced diabetes in their feet and legs, which can lead to life-threatening sepsis. Early treatment of bacterial and fungal infections, elevation, and exercise will also help people to manage lymphedema.

In 2008, CDC partnered with Interchurch Medical Assistance, a US-based nongovernmental organization, and provided key technical assistance in implementing large-scale lymphedema management programs.

India

An estimated 590 million of the 1.3 billion people at risk for lymphatic filariasis live in 250 districts in India and constitute about 40% of the world’s burden of this disease. Since its inception in July 2007, the Lymphedema Management Project in Orissa State has enrolled more than 5,500 patients in the program and constructed more than 5,000 sandals for patients who do not have shoes (Phase I of the project). Although wearing these sandals does not prevent lymphedema, they can prevent infections that lead to worsening lymphedema and elephantiasis of the leg.

Phase II of the project began in the summer of 2008. Three new areas of Khurda district are now part of the project, and an additional 9,000 lymphedema patients are expected to be enrolled in the program by mid-2009. Volunteers from the communities, health supervisors and personnel, patients, and family members have received both classroom and hands-on practical training in lymphedema management. To date, more than 1,200 people have been trained in 30 workshops, and 300 local volunteers have provided care to more than 5,500 lymphedema patients in the first year of the study.

Future plans include continued scale-up of the program to the entire district, enrolling close to 22,000 lymphedema patients by June 2010. This will be the largest nongovernmental organization-run lymphedema management program in India. A toolkit is being created to assist other nongovernmental organizations, in India and elsewhere, in starting their own programs.

Togo

Togo is a small, West African country of 5.5 million in which 35% of the population live in extreme poverty. With CDC’s assistance, Togo has become the first country in Africa with a national lymphedema treatment program. Health workers in more than 500 dispensaries and some 10,000 village community workers have been trained to diagnose lymphedema, discuss treatment and prevention, and provide motivation and support; about 1,000 patients with lymphedema are enrolled in the treatment program.

By using town criers, the radio, and posters, villages are building awareness of the program and encouraging villagers with lymphedema to go to dispensaries and enroll in the program. As a result, success stories abound in which patients who couldn’t walk are now walking again. Almost all patients see an improvement in their quality of life, most likely leading to the program becoming a model for lymphedema programs in other West African countries.

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