Children marked by leprosy in the 21st century, we cannot look away
Few months ago, I was invited to attend an event of the Military and Hospitaller Order of Saint Lazarus of Jerusalem . Born in the time of the Crusades, they dedicate themselves to hospital activity in all its aspects, from the sponsorship of leprosy study grants, to the donation of medical material to hospitals around the world, through the exercise of charitable works of all kinds aimed at the most disadvantaged groups.
In this event, the funds raised went to the Fontilles Association. Their main mission is to end leprosy and its consequences. To this end, they develop health cooperation and research projects and carry out special training courses and awareness-raising activities.
I was surprised to know that this disease is not eradicated in the 21st century, and especially the social stigma and related consequences it produces for children. I am therefore grateful for the collaboration of the Fontilles Association to raise awareness on this issue and Yolanda Sanchis Villar, Director of communication, for this post.
There are diseases that are not spoken of but affect more than one billion people in the world. They are what the World Health Organization (WHO) calls Neglected Tropical Diseases and they have common characteristics: they can be prevented and treated effectively, but they occur in contexts of great poverty, so that the people affected do not have access to the medication and to adequate health care. Disabilities and stigma accompany those who suffer from them. Among them we find an old acquaintance: leprosy, which, contrary to popular belief, is still present in the daily lives of many people in more than 100 countries.
Every two minutes a new case of leprosy is diagnosed and almost nine out of every hundred people infected are children under the age of 14.
Children account for 8.5% of new global leprosy cases, according to the World Health Organization (WHO) official data for the year 2016. Faced with this, one cannot look away: Why do we continue to allow them to suffer the physical and social consequences of an illness that can be cured today? Why is it they don’t have access to the treatment and care they need?
The reason is the lack of economic resources to care for those affected, who are among the poorest of our planet. In addition, the lack of health structures in many countries makes it impossible to have real figures of the magnitude of the problem and, without this information, it is very difficult to deal effectively with leprosy. Finally, the strong stigma that accompanies leprosy, causing those are affected to continue to hide or be hidden by their families.
Therefore, affected people reach hospitals with significant disabilities, and the number of children with leprosy increases, indicating there are still infections and the disease is not controlled.
Leprosy causes a great deal of suffering in these children, many of whom already having significant disabilities at the time of diagnosis. Disability, together with the stigma caused by leprosy, often leads them to abandon their studies, condemning them to a future of poverty. We must improve proactive and early detection to prevent these tragic consequences
The WHO has set by 2020 the goal of zero disabilities among newly diagnosed children (caused by leprosy). The Fontilles Association and the associations members of the International Federation of Anti-Leprosy Associations (ILEP) have endorsed this goal and we are striving to make it happen. We need everybody to be involved, and all societies to know what is happening, to help repair this injustice. Leprosy can be cured and we cannot allow to continue to find children who live daily with their terrible physical and social consequences in the XXI century.
- With campaigns for active detection of leprosy since, due to stigma and marginalization, these patients do not go voluntarily to the health services.
- For leprosy patients to have access to health services with the training and capacity to deal with them.
- To help those affected to overcome the disease in all its aspects: physical, mental, social and economic.
- Avoid the lack of political commitment to end leprosy, with the consequent reduction of economic and human resources.
- Train health personnel to detect and treat leprosy.
- Dedicate economic resources to research in methods of early diagnosis to avoid disabilities, a vaccine that makes possible the eradication of leprosy, find the reservoirs of the germ …
- The fight against stigma and marginalization suffered by people affected by leprosy should be one of our priorities as they pose significant obstacles to the diagnosis and treatment of the disease.
- Being a disease linked to poverty, the living conditions of the population should be improved.
How can we contribute?
In addition to financially supporting those who work caring for people affected by leprosy, we can contribute by eliminating from our vocabulary words and expressions that continue to nourish the black legend around this disease and perpetuate the subsequent stigma.
The word “leprosy” is often used as a synonym for something negative, dirty or accursed, or the term “leprous” in a pejorative way when we want to express feelings of isolation and marginalization.
The frequency with which these terms have been used in this way has made them fixate on our language and perpetuate not only stigma and discrimination towards people affected by leprosy but also myths and misunderstandings about this disease. Every time we use the word ‘leper’ we incorporate ideas from the past, images of isolation and fear of contagion, which perpetuates this vicious circle. Between two and three million people live with leprosy-related disabilities; for them, stigma and discrimination may be worse than the disease itself.
Author: Yolanda Sanchis Villar, Director of communication at Fontilles