The Neglected Aspect of NTDs

October 10th, 2013 by Emily Conron Leave a reply

Emily speaks with patients in Haiti suffering from chronic filarial lymphedema.

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.”

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