“Kasi syempre pag ganito…hindi maiwasan na pandirihan ka. Kahit nga sa sasakyan ka eh, kung ikaw sumakay ng jeep, iiwasan ka. (Because of this, it can’t be avoided that you’d be detested. Even in public transportation, if you ride the jeepney, people would avoid you.)”
*Jane can’t help but tear up as she recounts the way people would avoid her. She is part of the small population of people with leprosy in the Philippines. The numbers remain low up to now, but the prejudice associated with the leprosy population is great and grave.
The country has reached the WHO elimination target for leprosy of less than 1 in 10,000 persons in 1997.
In the Bible, people would distance themselves from lepers–and lepers themselves try to stay away from everyone else.
“Unclean, unclean” the leper would warn as he walks through the streets, wearing his lesions and disfigurements as marks of ‘uncleanliness,’ to set him apart from the ‘pure.’
More than 2,000 years may have passed, but the social stigma experienced by leprosy patients remains the same.
Is leprosy even relevant?
“Hindi ko rin kasi noon alam to [leprosy], ngayon ko lang din nalaman na may sakit na ganito. (I also didn’t know what this [leprosy] is before, it is only then [when I’ve got the disease] that I learned that a disease like this exists.)”
Jane was unfamiliar with the disease she contracted. When she was clinically diagnosed as a leprosy patient, that her father mentioned her late mother contracting the disease during her teenage years.
Many people, nowadays, are unaware that leprosy exists, rather, still exists. Some have heard of it, maybe from their parents, grandparents, history books, and even the Bible. But rarely does it pop to our minds when we have a skin ailment and guess what it could be.
While leprosy was once considered “incurable”, in 1978 – the WHO recommended the multi-drug therapy (MDT) as the world’s combat to leprosy. MDT is comprised of two or three drugs, depending on the kind of leprosy the patient has.
Soon after, the Philippines was declared leprosy free in 1997.
The “Great Mimicker”
“Akala ko ano lang, pigsa (I thought it was just a boil).”
It took Jane two years to have her skin lesions checked. She didn’t mind them much but people at her previous work urged her to have them checked at a local clinic in Calamba.
When Jane went to the clinic to have her bumps examined, they said that she had leprosy. She couldn’t quite believe it. She was then sent to RITM, as the local clinic claimed to have insufficient facilities to treat her accordingly.
After examining Jane, RITM confirmed that she had leprosy. Only did Jane believe, and accept, that she contracted the disease.
Leprosy is caused by the bacteria Mycobacterium leprae, which affects the skin and the nerves. Its effects depends on the person’s immunity status. It can range from whitish discoloration of the skin with insensation; to multiple bumps all over the body, face and ears; to disability and disfigurement.
Correct and early diagnosis
It is important to consult a specialist when you deal with skin lesions that do not respond to various treatments. Correct and early diagnosis of leprosy prevent drastic disabilities and disfigurements like losing nose bridge, blurring eyesight, non-healing wounds, and shortening fingers and toes.
“Leprosy is called by others as the ‘Great Mimicker’ because it mimics a lot of diseases,” explained Dr. Ma. Teresita Gabriel, RITM’s Dermatology Department Head and Leprosy Unit Head.
In far-flung areas, there is a scarcity of physicians. The health workers are the ‘frontliners’ when approached by people inquiring on their skin lesions and ailments. These may lead to misdiagnosis, she explained.
To address this, the DOH’s National Leprosy Control Program, in cooperation with RITM’s Dermatology Department, conducts leprosy workshops for healthcare workers nationwide. In these workshops, healthcare workers are taught how to correctly diagnose leprosy.
Out of the leprosarium, into the frying pan
“Kasi dati nung wala akong ganito (leprosy) nakakalabas ako kung san ko gusto. Ngayong hanggang bahay nalang eh. Syempre nahihiya na rin lumabas kasi syempre pag nakita ka ng tao, tititigan ka pa ng husto (Before, when I still didn’t have this (leprosy,) I was able to go wherever I want. Now, I only stay at home. Of course, I feel ashamed, because when people see you, they look at you intently).”
Since her diagnosis and treatment in 2013, Jane rarely goes outside her house. Her rare trips outside are to RITM for her check-ups.
Leprosy in the biblical days were diagnosed by priests and those diagnosed have to live in predetermined, certain conditions. For example: clothe in such a way that people would see their scars and boils, warn passers-by of their coming presence, and live away from homes and towns, as other people might contract the ‘incurable.’
Compared to the lepers in the Bible, leprosy patients in the succeeding centuries had leprosariums to stay in. Since there was no known cure then, the best way to avoid the spreading of the disease was to segregate the leprosy patients from the ‘healthy.’
Leprosariums in the Philippines were mostly set up and run by friars, nuns, and doctors. Due to leprosy’s severity in the Philippines during the 1900s, the government decided to move leprosy patients to a large-scale leprosarium in Culion, Palawan.
The Culion Leper Colony was established and was once considered the biggest leprosarium in the world, holding 31,803 patients by the end of 1980.
The colony eventually collapsed as the MDT rose. Nowadays, not many leprosariums still stand, and their patients few. Because, a rather marvelous feature of the MDT is that after one session of taking the prescribed drugs, the patient no longer infects other people, rendering leprosariums’ primary purpose irrelevant.
Like Jane, many patients seeking treatment are safe to roam around without risking infecting anyone. She knows that, but still opts to stay inside closed doors, away from prying eyes, and looks of disgust.
Out of Relationships
“Dati nung wala akong ganito, marami (akong kaibigan). Ngayon nagkaroon akong ganito, wala na… Dati mga napunta pa sila sa bahay, ngayon wala na (When I didn’t have leprosy, I have a lot of friends. But now that I have the disease, I don’t anymore… Before they even visit my house, now no one does).”
A leprosy patient may not be infectious anymore, but not everybody knows that. Once people see the scars, lesions and disfigurements, they treat you as an ‘untouchable.’
The MDT renders you uninfectious, but one of its drugs have side effects that still affects, yet again, the patients appearance. Patients with more than five skin lesions, multibacillary leprosy, is given dapsone, rifampicin, and clofazimine. Clofazimine’s side effects include skin discoloration, turning the skin in a brownish black color, and extreme skin dryness.
Hope found in treatment
“Malaki ang pagasa ko na gagaling ako, kaya lang tiyagaan lang talaga. (I have great hope that I’d be healed, but I really need to persevere.)”
Jane is no stranger to RITM as she’s been going to the Institute’s Dermatology Clinic for three years now. She’s very active in RITM’s leprosy program and often visits the hospital even when she has no check-up scheduled for that day.
She’s joined livelihood trainings held by the Technical Education and Skills Development Authority in the Institute.
She’s also part of the Hansen’s Disease Club, where she meets other leprosy patients and hear their stories.
Jane also joins lay fora wherein leprosy patients are encouraged to meet with non-leprosy patients. In these meetings, RITM gives lectures, patients share their stories, and get support for their journeys to complete healing. Family members and other hospital patients are among the non-leprosy patients during lay fora.
Dr. Gabriel stresses the point that these activities are done to “remove the stigma” associated with leprosy inflicted persons.
“Mahirap din”
When Jane was telling her stories, she kept repeating the word ‘mahirap’– referring to the pain she encounters, to the judgement she receives, and to the fact that she was left alone by the people she cares about.
Amidst all the persecution and judgement, and even knowing that one of the drugs that’s curing her is causing more deplorable skin marks, Jane is pushing through with her treatment.
Leprosy is a historically acclaimed disease that shook the world and changed lives. We achieved a great milestone in eliminating it, but we cannot stop there. We cannot just forget the leprosy patients now. They still matter, and they’re fighting to make themselves heard. We just have to listen to their battle cries.
“Kung pagsubok man binigay mo sa akin, kakayanin ko. (Although You give me challenges, I will endure.)”
by Hannah Benedicto, College of Development Communication