Still Exists Despite Already Disappeared

Still Exists Despite Already Disappeared
Writer :
Iin Saputri
Editor :
Intan Qonita N
Translator :
Intan Qonita N

'Kandala'. That's the Makassar language which means leprosy.

Since childhood, I, who was born and grew up in Makassar, has been taught by the environment about the stigma against individuals with leprosy. Often my siblings and I find our parents shudder in horror when they see a kandala (person with leprosy) passing by in front of the house. Even when they just talked about their neighbors who happened to have leprosy and ended up being disabled due to late treatment, they couldn't hide their negative expressions, either horrified, or disgusted. Our parents strongly discouraged us from getting close to lepers for fear that we might be infected.

Worse, leprosy or kandala is often used as a curse word and even a threat to people who are considered to have broken promises or told lies. For example, when someone conveys information, then the recipient of the information, because they do not believe it, will say, "Kandala`ko [if you lie]" which means, "You will get leprosy [if you lie]." Then to express the sincerity, the information giver will answer, "Kandala`ka`" which means, "I will get leprosy [if I lie]." Leprosy seems to be the toughest punishment for someone who disobeys.

It is undeniable that the stigma of leprosy and its sufferers has existed for thousands of years. Our community who are said to be famous for being religious are certainly no stranger to various stories about people with leprosy in the holy book. There are often found stories of people with leprosy who are ostracized by society so that they become marginalized and full of discrimination. Surprisingly, until today, the stigma has not disappeared, even though in fact this disease is not dangerous as long as it is treated early. Medicines are also available for free at the Public Health Center.

This erroneous view and understanding is not easily abolished. The stigma is still attached to a person even though the person in question has fully recovered from leprosy so that he is referred to as a person who has had leprosy (OYPMK), no longer a patient.

In a speech held by the KBR radio network to welcome the commemoration of World Leprosy Day (WLD) 2022, an OYPMK named Al Qadri told about the bitterness of the lives of people with leprosy or OYPMK in his area in South Sulawesi.

"In my village [the leprosy village], there are no outsiders who want to propose the women, none of the men want to accept the proposal," said the Deputy Chairman of the National Leprosy Independent Association in the KBR Public Space Broadcast entitled " Reject the Stigma, Not the Person", Wednesday (26/1).

There are many other examples that Al Qadri told about the discrimination experienced by OYPMK in various fields such as education, work, politics, and even religion. "We [OYPMK] are prohibited from praying in congregation in the mosque for fear of infecting others."

Until now, the number of leprosy cases in Indonesia is still quite high. "If you look at the global distribution, Indonesia is still in the third position with the highest number of leprosy cases after India and Brazil. This is certainly not proud," said Technical Advisor for Netherland Leprosy Relief (NLR) Indonesia, Astri Ferdiana, at the same event.

Launching the page of the Directorate General of Disease Prevention and Control (P2P) of the Indonesian Ministry of Health (29/1/2021), Indonesia accounts for 8 percent of all cases of leprosy in the world. As of January 13, 2021, 26 provinces and 401 districts/cities have achieved elimination, marked by a prevalence rate of less than 1 case per 10,000 population.

Nevertheless, there are still many pockets of leprosy in various regions in Indonesia. A total of 9,061 new cases of leprosy were found in Indonesia. This figure is lower than the discovery of leprosy cases in recent years, which is around 16,000-18,000 new cases per year. The decline could be due to a lack of tracing during the COVID-19 pandemic.

Commemorating World Leprosy Day this year, the World Health Organization (WHO) has the theme "United for Dignity". WLD which is commemorated every last Sunday of January is intended to raise public awareness about this disease and call on everyone to respect the dignity of OYPMK because they too have the same rights and opportunities as other members of the community.

Of course, the most important thing is to eliminate the public's belief in the myth about leprosy. Citing the page (22/7/2021), here are a number of myths and facts about leprosy:

MYTH: Curse and Hereditary Disease.

In fact, leprosy is caused by infection with the bacterium Mycobacterium leprae.

MYTH: Easily Contagious.

In fact, leprosy will not be easily transmitted unless you have repeated contact with the sufferer. Many believe that leprosy can be transmitted easily because it can spread through the air, but that is a big mistake. You will only be infected with leprosy if it is proven that you have repeated direct contact with sufferers such as sharing clothes or towels.

MYTH: Incurable.

In fact, leprosy sufferers can recover completely if they get prompt and appropriate treatment. With multidrug therapy (Multi Drug Therapy/MDT) and directly supervised by a doctor, leprosy can be completely cured.

MYTH: No Serious Complications.

In fact, untreated leprosy can lead to some serious complications, including organ damage. If not treated immediately, the patient will be at great risk of serious health complications such as nerve damage, deterioration of vision function, to permanent disability in several parts of the body.

From the explanation above, the conclusion that can be drawn is that the stigma that is still attached to OYPMK is completely unfounded. They are no longer patients, they have made a full recovery. Even those who are still patients do not need to be shunned arbitrarily because they can actually hinder healing efforts. The leprosy treatment process takes a long time, 6-12 months. For this reason, they need the support of the people around them, for example by reminding them not to forget to take their medicine every day.

According to Al Qadri, when he was a patient decades ago, he stayed at home with his family, ate with them, and slept in the same room with his younger siblings. However, none of them were infected. His two children, who are now adults, do not have leprosy even though they were born to a father and mother who are OYPMK.

Therefore, let's erase the various stigmas that we have attached to people with leprosy even though the disease itself has disappeared from them.
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