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Being all members of the human race surely we have all sympathized for the less fortunate; whether it was for what they had or what they didn’t. There is a condition that most have never considered, and probably have never heard of. Imagine big white and red spots that decorate every part of your body so that they can’t be hidden. On the inside you have a painful sinus infection and after a while a loss of peripheral nerve sensation so bad that your hands and feet go numb. You could go blind or you could loose your nose, ears, or even legs to amputation. Unfortunately the physical ailments are the best part. Throughout history leprosy sufferers have been cast off from society with as much concern that dead bodies are sent to graves.
If you were in ancient Israel, your fellow citizens would have you shave your whole body, eyebrows included, and live outside the city in tattered clothing uttering "unclean, unclean" (Lev. 13, 14). To make it worse the same book that was worshiped and read aloud on Sundays was telling you that it was punishment from God, and if you were never relieved of this devastating isolation, then you deserved it.
If you had leprosy in the Middle Ages it was seen as "death before death." A priest would examine you, a suspected leper, and if confirmed he would perform a special "Leper Mass." After dust was symbolically scattered over your head you were lead to your own empty grave to witness its filling. From then on you must renounce all property and inheritance. You could never again enter a church, marketplace, tavern, house, or public meeting place. You could not walk down narrow streets or speak to children, or speak to anyone downwind. You would be given a distinct uniform, such as a robe with an L sown into it, and a bell to rattle whenever anyone approached. You would be allowed one possession: a wooden bucket on a long pole, which you could hold out to beg for food. (Brand, Yancey) This was the life of a leper.
If you live in modern day India or Brazil, then you’d have a good chance of receiving the drugs that would cure you. In some previously endemic countries like the Republic of Congo or Mozambique leprosy is a thing of the past (Mission). There is a cure for leprosy now and it is available to virtually everyone, but the path to it’s elimination is still long and treacherous.
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Leprosy is caused by Mycobacterium leprae, a bacterium that primarily affects the skin and mucous membranes although it may also affect certain other tissues, such as the eye, the mucosa of the upper respiratory tract, muscle, bone, and testes (Gussow). There are two types of leprosy lepromarous and tuberculoid, the later being the more severe. Genetics play a crucial role but other than that the mode of transmission is uncertain.
Since the dawn of man, a lack of understanding has created a stigma that is rarely been so synonymous with a disease. Paul Brand, a surgeon and authority in leprosy research and elimination, lists three specifics as the origins for the stigma of leprosy. One: the peculiar horror of the disease symptoms. Sometimes called the "creeping death" it is a disease that affects the hands and face and cannot be easily hidden. Two: the fear of contagion. The fear of widespread contagion is largely a myth, only 5% of people lack natural immunity to the disease. Three: the belief that the disease is a curse from God. (Brand, Yancey) The Holy Bible has associated it with impurity, which is a needless to say a hard reputation to shake.
Brand effectively covered most of what causes the drastic stigma surrounding the disease but in further research there appears to be another explanation that he has left out of his top three. After all these years of research beginning in 1873 a lot has been learned but we are still oblivious as to how the bacteria is transferred from one person to the next. Biblical stigma has been greatly dispelled and there are thousands of devout Christians, including Paul Brand, who are dedicating great time and effort into the elimination of leprosy. However, the extent of help these people provide depends completely upon their own safety. Prolonged and intimate contact with an active case is believed to be necessary for infection to take place. However, some people have acquired the disease after brief exposure. (Gussow) Aside from the volunteers and paid doctors are the civilians who have been carrying the stigma all along. They are not likely to invite leprosy sufferers into their homes, or even share a bus with them if they aren’t sure how dangerous a simple handshake can be. Conversely, the leprosy sufferers aren’t eager to relate with non-leprosy sufferers if they are going to be treated like pariahs. Although bitterness and social misanthropy has always run deep in leper colonies it is unlikely to find a leprosy sufferer happier outside of one.
Leprosy sufferers have always been quarantine due to people’s fear of the unknown. The result of quarantine though has often been counterproductive. People with noticeable symptoms of leprosy would often hide out and not report to a doctor for fear of being shipped off to a colony or, they would wait until their children were fully raised and on their own. Ironically, the central authority’s no tolerance approach kept the potential for contagion alive through undetected cases. As demonstrated in Spain in the early 1900’s. The Franco regime had a rigid policy of notification. When Franco died and the government lifted the regulations the number of reported cases doubled. The next year, the reported cases doubled again. "Public health officials concluded that three-fourths of the leprosy cases in Spain had been in hiding. Half of them sought treatment the first year the law changed; half of them waited another year to see whether the government had been setting a trap." (Brand, Yancey)
In the 90’s the disease was so stigmatized that doctors in India had problems just getting the effected to step forward. In 2000 the Novartis Foundation, a life sciences company and member of The International Anti-Leprosy Association (ILEP), began a new eradication strategy "seeking to challenge the continuing myths and stigma." They advertised radio and TV spots featuring national sports figures Sachin Tendulkar, a cricketer and Saurav Ganguly, a badminton player along with common folk such as a computer operator and a housewife who have all been cured of leprosy (Novartis). The effectiveness of this campaign hasn’t yet been recorded but due to the decreasing number of leprosy sufferers in India, it can be assumed that it was successful.
Paul Brand wrote an article about debilitating diseases that exemplified how devastating social isolation can be for leprosy sufferers. One day he was telling a new patient how he hoped to correct the deformity in his hands but the damage done to his nose was inoperative. To lighten the mood he teased him a little telling him at least you’re not a woman and don’t need to be so concerned with vanity. He put his arm around the patient and smiled into his face to make sure he understood that he was joking. The man started crying and talking rapidly through his tears. Doctor Brand turned to his Indian social worker to translate the man’s sobs. "’He is just saying that nobody has put an affectionate arm around him for years, and here is a doctor who behaves as if he loves him. He is crying for joy.’" (Brand)
Today across the world there is a legitimate and realistic hope for leprosy
sufferers. Thanks to the World Health Organization (WHO), The Leprosy Mission (TLM) and other organizations of the ILEP leprosy may someday soon go the way of smallpox and vanish completely from the domestic face of the planet. Since 1981 leprosy has been on the decline due to a Multi Drug Therapy (MDT) discovered by the WHO. Which is a combination of three drugs; dapsone, refampicin, and clofazimine that are administered simultaneously. Before that time, all the way back to 1940, the drug dapsone was being used by itself to cure leprosy. As the doctors had expected M. leprea eventually developed a resistance. The chances of M. leprea developing a resistance for all three drugs is about 1 in 500 million and even then the mutated organism would have to be passed on, so basically it’s undefeatable. (Mission)
In 1981 the WHO’s goal was to limit leprosy to 1 in 10,000 effected globally and MDT medication for all by the year 2000 (the 1 in 10,000 ratio is chosen because doctors have affirmed that once achieved the transmission will dwindle and stop). Apparently the novelty of the millennium got the best of them. The irrepressible disease surpassed 2000 and actually increased in cases into 2001. With this sort of bacteria it is common to see occasional outbreaks in unexpected times and places. Due to the increase, or rather the decline of progress, the WHO had another conference in ’99 much like the one they had 18 years prior and reasserted their efforts. The deadline was changed to 2005 (Mission).
Over the past 15 years 11 million leprosy sufferers have been cured. Prevalence has dropped 85% and it has been eliminated from 98 countries. As of January 2000 the international leprosy rate was 1.25 in 10,000 (and 70% of those cases were in India.) The WHO’s elimination plan is running right on track (ILEP).
The diagnosis of leprosy no longer leads to a short and depressing life, accented by the loss of your hands and feet. The question for the sufferers isn’t "why me?" but a more optimistic, "how can I stop it?" Throughout their treatment the stigma that has always existed will continue. It is still entrenched in the folklore and ideology of many cultures. TLM and other international organizations recognize the importance of destigmatizing the disease and reintroducing the patients to society while simultaneously treating them.
One of the areas of focus for ILEP is helping the long rejected leprosy sufferers who have been permanently crippled back to a regular, happy life. Besides gaining them social acceptance they need much guidance to personally adjust to their disability. In an interview clinical psychologist Leanne Parker explained to me how she helped her physically disabled patients. Saying, "Sometimes people think that you have to accept what’s happened to you but you may not ever need to accept it, you need to adjust to it." She says that acceptance implies that things will never be the same again and for some people that is too much, taking a temporary approach is much easier. "Adjusting is just like, okay, I can’t walk today so I better learn to get around in my wheelchair." She adds that adjusting is like "keeping the hope for down the road." (Parker)
The life of a leprosy sufferer has obviously improved over the years but the legacy is not yet finished. As long as there is leprosy there will be people to suffer from it, hate it but ultimately cope with it, somehow.