LEPROSY: ENDING DISCRIMINATION, STIGMA, PREJUDICE

Feb 10, 2019 Consumer Concerns, Features / Columnists

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PAT DIAL

Consumer advocates worldwide have special concern for sufferers from leprosy. Such concern is evoked not only by the terrible suffering which afflict those infected by the disease but also because for centuries their human rights have been disregarded and they have been subjected to every type of discrimination.
On the last Sunday of January when World Leprosy Day was observed worldwide, we joined with others to try to educate the public about the disease so as to clear away the myths which have grown over it so that the life of sufferers could be more comfortable and they be treated with more understanding.
This year, 2019, the theme of World Leprosy Day is “Ending Discrimination, Stigma, Prejudice”. For centuries, indeed millennia, there was severe discrimination against sufferers. It was believed until the 19th century that the disease was a curse from God and in some way, the sufferers were evil.
They were therefore isolated and forced to live in leper colonies and every kind of humiliation was imposed on them. In Europe in the Middle Ages, for example, they had to have a ringing bell attached to their bodies so that others could avoid them if they were moving about.
In addition to being a divine curse, it was believed that the disease was highly contagious and as such, people, even relatives, avoided sufferers. They were isolated and lonely and generally did not have enough to eat.
The only persons who showed them any compassion were some nuns and monks who brought them food and ointments for their bodies. Buddhist monks were more caring and many devoted their lives to helping lepers. The disease disfigured the body with changes in the skin colour in various parts of the body, especially the face and hands and chest, and loss of the fingers and toes which fell away.
The disease attacked the nerves and would often cause the spine to be warped twisting the body. Often, the skin was covered with incurable sores. Sufferers would therefore appear to be grotesque.
It was not until the 19th century that the West discovered some treatments used in India and China. The main such treatment was chalmoogra oil which came from Ayurvedic Medicine. These Asian treatments sometimes brought some relief and sometimes not, but since there was no other treatment available, Asian treatments continued to be used until the 1940’s.
Western scientists were researching into finding treatments and cures but the first breakthrough came only in 1873 when Dr. Gerhard Hansen of Norway discovered the causative agent of leprosy – Mycobacterium leprae. The effects of Dr. Hansen’s discovery were so far-reaching that the disease came to be known as “Hansen’s Disease”.
The term Hansen’s disease came to be widely used since the word “leper” encapsulated many prejudices. Dr. Hansen’s discovery destroyed the myth that the disease was a curse from God. It was now realized that the disease was not contagious and by 1940’s three effective drugs were discovered and put into use, either separately or in combination. These drugs were Clofazimine, Rifampicin and Dapsone. Antibiotics were also effectively used in the early stages of the disease.
Today, it is widely known that leprosy or Hansen’s Disease could be cured and that it is not highly contagious. Prejudices against sufferers have largely disappeared but they survive as a strong underground current and it is the feeling that there is something supernatural about the disease which causes many sufferers to consult obeah men first before medical doctors. The Theme of World Leprosy Day “Ending Discrimination, Stigma, Prejudice” is therefore still very relevant.
One may be infected with the disease without knowing it. One of the most common outward signs of the disease is the appearance of a patch on the skin which is slightly lighter than the colour of the rest of the body. Since Hansen’s Disease attacks the nerves, that patch of skin would show no sensation if one is infected. The pinch test could be used whereby the patch of skin is pinched and then touched and if there could be no differentiation, then one may be infected.
In Guyana, sufferers from the disease could obtain treatment at the Leprosy Control Clinic which is situated in the Palms compound, Brickdam, Georgetown. The Director of the Clinic is Dr. Heather Morris-Wilson who is supported by a competent team.
Dr. Morris-Wilson has pointed out that though the disease could be controlled or cured, sufferers could very often be affected by grave psychiatric problems. In her own words “Persons affected with leprosy have been shown to have a higher prevalence of psychiatric problems than the general population of patients with other diseases.
“Depression could reinforce feelings of social exclusion, interference with work and daily life, reduce social interaction and lead to further isolation, and in severe cases can even lead to suicide”
Dr. Morris-Wilson and the Ministry of Public Health have been working in accordance with the World Health Organization (WHO) Global Leprosy Strategy 2016-2020, the operational elements being (1) Early case detection before disabilities occur with new emphasis being on child cases (2) Conducting campaigns in areas not covered by the Dermatology programe to target higher risk groups (3) Develop a national plan to ensure screening of all close contacts, especially household contacts (4) Incorporating specific interventions against stigma and discrimination due to leprosy.

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