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 email@example.com.
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
January 18th, 2011
By: Alanna Shaikh
At the one year anniversary of Haiti’s catastrophic earthquake, cholera is on everyone’s mind. Haiti is deep in the grip of a cholera outbreak. Deaths have passed 1,500, and there have been more than 20,000 cases of the diseases. It looks as though the rate of new infections is finally beginning to slow, but there is no guarantee that the slowdown is permanent. Now, cholera is not a neglected tropical disease (NTD). But the cholera outbreak in Haiti points to something important: infrastructure is vitally important. It’s not lack of physicians, hospital beds, or medical care in general causing cholera in Haiti. It’s lack of clean water and people living in close quarters.
That is not just true for cholera. One of the biggest obstacles to reducing and eliminating NTDs is poor infrastructure, and the poverty that leads to that poor infrastructure. You can’t do mass drug administration if there are no roads to get to people who need the drugs. You can’t eliminate water-borne illnesses if people have no way to get clean water. And you can’t treat patients if there are no buildings to see them in or safe places to keep medical supplies and equipment.
Read more: Cholera is not a NTD
November 9th, 2010
The student-run group ND Fighting NTDs at the University of Notre Dame is sponsoring a campus Haiti Awareness Week November 8-14, 2010! ND Fighting NTDs is a student-driven initiative dedicated to the awareness, political will and funding necessary to control and eliminate the most common neglected tropical diseases (NTDs) – a group of disabling, disfiguring and deadly diseases affecting more than 14 billion people worldwide with cures that are available but underfunded. Publicity Chair Eileen Lynch has kindly provided End the Neglect with a blog post about the weeks festivities, along with a an innovative case for support video that ND Fighting NTDs created.
By: Eileen Lynch
To solve a problem you’ve got to know the problem. That’s the theory behind NTD Awareness Week, hosted Nov. 8-14 by Notre Dame University’s newest social concerns club, . When most people hear “NTD” they have no idea what that means. ND Fighting NTDs is determined to change that. This whole week the club will be hosting various fundraisers and events aimed at informing the Notre Dame community of the insidious affects of the world’s most forgotten plagues.
We started with the playful: giving away free “silly bandz” bracelets in the shape of bugs to let people know we are a presence on campus. On Wednesday, the fundraising starts. Five Guys, a local restaurant, will donate 10% of all sales between 7:00 and 10:00 pm to ND Fighting NTDs. On Thursday we will be selling “dirt cup” desserts, with oreos, pudding and gummy worms to educate people about how NTDs are spread. Each cup comes with a gritty fact about NTDs. Finally, on Friday, ND Fighting NTDs is hosting a concert and petition signing, where we ask for support from our congressman in ending the neglect of tropical diseases.
For ND Fighting NTDs, Awareness Week is just the beginning. By the end of the week, we want everyone on campus to know about and be horrified by NTDs. From there, the possibilities are endless for garnering support and funds in the battle to save lives. The Fighting Irish are proud to fight the neglect!