Hope Clubs: Empowering LF patients in Haiti

 

By Raquel Corona-Parra

The Global Network is working everyday alongside multiple partners around the world to improve the lives of those suffering from NTDs. The Christian Blind Mission (CBM) is a Global Network partner working in Haiti to fight the disabling effects of Lymphatic Filariaris in individuals, as well as to raise awareness about the disease among the general public.

Lymphatic Filariaris (LF), also known as elephantiasis, is an extremely painful, debilitating and disfiguring disease. The disease is caused by the thread-like parasitic filarial worms Wuchereria bancrofti and Brugia malayi, which live in the lymphatic system and can cause extreme swelling (or lymphedema) of the extremities and genitals. LF infection can be treated with a combination of medicines that cost approximately 50 cents per person per year. Symptoms of advanced stages of the disease, lymphedema, can also be addressed with a morbidity management plan.

General meeting of all members of self-help groups at the Hospital Sainte Croix in Leogane, Haiti, September 2012. Photo by CBM USA.

Just as important as the medicine needed to treat the physical effects of LF is the treatment necessary to alleviate the emotional effects of the disease. Those with severe symptoms are often unable to work because of the physical disability brought on by the disease. Many suffer from social stigma and marginalization as a result of their disfigurement. CBM is working to empower patients of LF through proper self-care guidelines as well as with the psychosocial and emotional support that is vital for their physical and emotional well-being.

CBM’s project in Haiti is currently concentrated in the communes of Leogane, Cap-Haitien and Carrefour, where the prevalence of LF ranges from 10 to 45 percent—well above the national prevalence of 10 percent. CBM has partnered with the Hospital Sainte Croix and the University of Notre Dame to establish self-help groups or Hope Clubs, as they are called in Leogane, for people suffering from LF. As part of the first year of activities, CBM has recruited 200 LF patients to join the Hope Clubs in Leogane to form 10 self-help groups.  Members of the clubs meet bi-monthly to share information about basic self care and hygiene and to develop mutual support among members. The Hope Clubs are led by animators who have received training from the U.S. Centers for Disease Control and Prevention (CDC) on risk reduction strategies and basic limb care.

Around 90 percent of Hope Club members are women. Many of them have reported that they feel rejected by their families and communities. A majority of them do not have a job or a way to sustain themselves, which has further trapped them in a cycle of poverty. As we celebrate International Women’s Day today, the Global Network would like to emphasize the link between a woman’s health and her opportunity for development and progress. The support provided by the Hope Clubs is already making a difference in the lives of the women and men of Leogane.

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Antoinette Saint-Fab, in front of her house. Photo by CBM USA.

Antoinette Saint-Fab was 15 years old when she contracted LF; her mother also lived with LF. Her story serves to illustrate the genuine difference made by support groups in the lives of those suffering from the effects of LF. Antoinette is a single mother of three who has not been able to work for many years because of the physical disability brought on by LF. She has suffered from social stigma for years, and explains that she was rejected by the father of her children because her lymphedema was getting worse, with large lobules and very hard fibrotic skin on her legs. Previously, she had to travel approximately half an hour to a clinic where she received treatment for acute LF.

Antoinette recently joined one of the Hope Clubs in her home town of Leogane, Haiti, where she receives advice on hygiene practices that can control the severity of lymphedema. Antoinette has expressed that the Hope Club is the only place where she feels comfortable and understood; the Hope Club is a place where she receives support from others who are going through similar hardships. Antoinette hopes to become economically autonomous, so as to provide for herself and her children properly.

Among CBM’s current and future plans are launching Hope Clubs in the communes of Cap-Haitien and Carrefour in the upcoming months.

CBM is an international development organization committed to improving the quality of life of people with disabilities in low income regions of the world. CBM currently works in 81 countries through 749 projects, serving millions of people with disabilities annually.

LF affects more than 120 million people in 80 countries worldwide, mainly in poverty-stricken areas of the world. In Latin America and the Caribbean, there are 720,000 people infected with LF and 11 million people are at risk for contracting the disease; however, this is the region that is closest to achieving the elimination of NTDs. Haiti and Guyana have the greatest LF disease burden in the region. Brazil and the Dominican Republic have more restricted disease foci, and transmission has been interrupted in areas of Costa Rica, Suriname and Trinidad and Tobago. Current efforts such as those taken on by our partner in Haiti, CBM, make elimination of LF in the region possible within 3 to 5 years.

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