Emily speaks with patients in Haiti suffering from chronic filarial lymphedema.
The physical and economic effects of NTDs are obvious and well-documented: they stunt growth and cognitive development, cause anemia and malnourishment, prevent children from attending school and parents from working – the list goes on. But perhaps the most neglected aspect of NTD research and programming concerns the psychosocial impact of these diseases. As today is World Mental Health Day, it seems fitting to highlight this connection.
In June, a welcomed news for Haiti and the world, as LF is a particularly devastating NTD. Unlike most NTDs, its most advanced condition, known as chronic filarial lymphedema, is irreversible past a certain stage. At this stage, LF-infected individuals are afflicted with painful, debilitating, and disfiguring swelling of one or more limbs. While the early stages of LF infection can be prevented and treated with widely available and affordable drugs, once the condition progresses to later stage lymphedema, the swelling can only be contained – not reversed. 40 million people around the world are currently living with this devastating condition.
I had the privilege to meet 30 of these patients this past January when I traveled to Lèogâne, Haiti to conduct research on the impact of chronic filarial lymphedema on mental health, and how this impact could be mitigated by religious beliefs and practices. With the support of the Notre Dame Haiti Program, which has been fighting LF in Haiti for almost twenty years, I interviewed these patients to assess their mental health, social support, and spiritual life.
For these 30 individuals, the swelling of their limbs often limited their ability to work in an economy already burdened by high unemployment. The acute adenolymphangitis (ADL) attacks caused by LF infection sometimes left them bed-ridden with pain and fever for hours or days. But perhaps the most difficult aspect of their condition, even worse than the financial burden of their illness or the physical suffering it caused, was the social isolation these individuals experienced as a result of their gwopye – the Haitian Creole term for “big leg,” and the colloquial term for lymphedema.
As their swelling progressed, relationships with friends and family members, who believed they could catch gwopye1 psychiatrist for every 200,000 people, mental health care is nearly impossible for most Haitians to access – and the additional economic hardship and stigma caused by lymphedema makes it even more difficult for these highly vulnerable individuals to receive such care.
Establishing morbidity support programs in LF-affected areas – programs like the aptly-named “Hope Clubs” currently operating in Lèogâne with the support of the Global Network, the Christian Blind Mission, the University of Notre Dame, and the Hospital Sainte Croix – can help individuals with chronic filarial lymphedema cope with the significant psychosocial impact of this disease. Such support programs combine morbidity care, or treatment for lymphedema-infected limbs, with the social support of forming relationships with other affected individuals. Such programs are a community-centered, sustainable approach to mental health care in areas like Haiti where such care is currently beyond the reach of many individuals most in need of it, and ought to be replicated in many areas of the world where LF is endemic.
Large-scale interventions to control and eliminate LF in Haiti are underway, but as a recent study on the psychosocial impact of LF put it, such programs must make a special effort to reach the “highly vulnerable category of patients in advanced stages of the disease [who have] low visibility.” On the whole, “The inclusiveness and the caring quality of a health strategy for any given disease has to be judged by its capacity to reach out to the most vulnerable groups affected.”
As we progress towards our goal of worldwide control and elimination of the seven most common NTDs by 2020, we cannot forget the individuals with chronic filarial lymphedema, or those already blinded by trachoma or onchocerciasis, for whom this dream will be realized too late. The vulnerable individuals afflicted with chronic filarial lymphedema, and others like them already suffering from the irreversible symptoms of some NTDs, should be at the heart of our efforts to rid the world of these preventable diseases and their effects. Only then can we truly hope that “Together, we can see the end.”
July 18th, 2013
If you’ve been following along with our blog, you know that we’ve recently applauded the positive news coming from Haiti about its efforts to treat and control NTDs, particularly lymphatic filariasis – a parasitic infection spread by mosquitoes that can cause severe and sometimes irreversible swelling of the limbs and genitals.
In two weeks, our partners at the the University of Notre Dame and the Envision Project, managed by RTI International and funded by the U.S. Agency for International Development, along with government officials from Haiti, will share their forward-thinking goals and perspectives on different strategies to control and eliminate lymphatic filariasis and soil-transmitted helminths (intestinal worms).
Those interested in NTD control and prevention efforts are invited to join the panel event and following reception. Please RSVP to Christina Powell at firstname.lastname@example.org.
On the Road to Elimination: The Haiti Neglected Tropical Disease Program
Thursday, July 25, 2013
1400 16th St. NW #210
Washington, DC 20036
- Welcome and Introductions, Opening Remarks: Dr. Pat Lammie, CDC
- History of LF Program and Integration with STH, Scope of Problem: Dr. Oscar, Ministry of Public Health and Population
- STH Efforts in Haiti and Benefits of Integration: TBD
- Why School Based Interventions Work: Dr. St-Eloi, Ministry of Education
- Urban MDA, the Case of PAP: Dr. Desir, University of Notre Dame
- Beyond Prevention, Focus on the Patient: Amazan Bernadin, CBM
- Use of the NTD Platform for Other PHC Benefits: Dr. Direny, IMA World Health
June 17th, 2013
Update: Dr. Peter Hotez shared his perspective in Infectious Disease News on Haitis efforts to eliminate lymphatic filariasis. Read his comments here.
For those of us in the United States, a mosquito bite is just a harmless itchy nuisance. But for around 120 million people in 80 countries, a mosquito bite can be life-altering.
By transmitting the larvae of parasitic worms, mosquitoes have caused widespread suffer from devastating physical problems – weakened immune systems and disfiguring inflammation of the skin, limbs and genitals – they also endure social ostracization, chronic unemployment and endless poverty.
Fortunately, as the World Health Organization (WHO) commitments and people’s willingness to be treated, even more meaningful progress will take place in the coming years.
Haiti is just one of many nations that has implemented an MDA intervention and seen positive results. NPR’s Jason Beaubien examination that found, “by late 2011, all areas in Haiti where LF is endemic had received MDA, except Port-au-Prince, which was considered the most challenging area.”
Mr. Beaubien also noted that Haiti’s efforts to manage elephantiasis will spark change in the rest of the region. Dr. Patrick Lammie, who the Global Network posted an interview with last week, commented:
The successful deworming campaign in Haiti is a major step forward not just for the country but for the whole region, says Patrick Lammie, an immunologist with the Centers for Disease Control and Prevention, who also contributed to the current study.
“If a country like Haiti, with all of the challenges that they’ve faced over the last few years, is able to achieve full national coverage, I think that is as an important example for other countries, which are struggling to scale up their programs as well,” he says. Eliminating elephantiasis in Haiti would also help the Dominican Republic control the disease.
Over the next few years, we look forward to tracking Haiti’s progress on the elimination of elephantiasis and the improvement of Haitians’ health and well-being.
Click here to read the full NPR article.
March 7th, 2013
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. Read more: Hope Clubs: Empowering LF patients in Haiti