Former leprosy patients celebrate Chinese New Year with each other
KUALA LUMPUR: Ooi Lok Seng could not help but smile when he saw the entourage of visitors in red bearing hampers, Mandarin oranges and ang pow.
The Chinese New Year is a happy time for the 65-year-old. It was a time when he and his friends would receive visitors and be showered with gifts, not only from family members but NGOs and the public as well.
“’Gong Xi Fa Chai’. Thank you for visiting us,” Ooi greeted his guests from the Selangor State Development Corporation (PKNS) at his “home” in the National Leprosy Control Centre (PKKN) near the Sungai Buloh Hospital here, recently.
Ooi is among the over 100 leprosy patients remaining at the centre. They remained there despite the disease being no longer as dangerous or contagious as it was when the settlement was created in 1926.
Speaking in heavily accented Malay, Ooi openly shared the story of his life with the disease.
“I was 15 when I first felt stinging pain around my right thigh. This was followed by white spots around the region.
“At the time I was living in Penang. A doctor there diagnosed me with leprosy and asked me to be moved to PKKN, the containment area for those afflicted with the disease at that time,” said Ooi, who was never married.
Though initially he felt lonely, he was grateful that his siblings often visited him particularly around Chinese New Year.
PKKN has been his home for 50 years now. The well built sexagenarian has no desire to return to his home. To him, his family were those at the centre who knew what it was like to be afflicted by the disease. He was at peace with his situation.
“This is my last home. I have lived here for so long and I’m happy here,” he said, beaming.
For Heng Pak Nang, the centre was where she met her husband. Many memories had been built there, making her reluctant to leave the place.
“I met my husband here. My husband did not live long but we had a daughter together, and now I have two grandchildren,” said the 80-year-old from Sekinchan, Selangor.
Heng was grateful that her daughter was born healthy and remained that way.
Leprosy had affected Heng’s health badly, nearly robbing her of her sight.
She first experienced symptoms of the disease at three years old. Her hands had been red and were painful and itchy.
When asked if she missed home and living with her daughter, the bespectacled lady shook her head.
“I like it here. This place holds memories of my time with my husband.
Whether it’s the Chinese New Year or any other festival, we’d celebrate it here together with our friends, just like one big happy family,” she said, smiling. Her daughter, who now lives in Johor, respects her choice and often visits her. She even came to celebrate the Chinese New Year together.
The Sungai Buloh Hospital Director, Datuk Dr Khalid Ibrahim said that to date, 46 leprosy patients were staying at the PKKN ward.
“The wards are for patients who still need medical attention due to regular illnesses such as fever. Another 78 (healthier ones) live in chalets around the PKKN area,” he said.
He said the government used to supply the necessities for the residents of the chalet to cook.
However, in recent years, the government had replaced the necessities with a RM22 daily meal allowance, as many of the patients had limited mobility and energy to cook due to old age.
Dr Khalid said if any of those in the chalet had to be admitted into the wards for illnesses, the allowance would be revoked as food is already provided in the wards.
Patients who have completed their course of treatment for leprosy are allowed to go home. However, many refuse to do so even though their families await their return.
This is due to the social stigma attached with the disease and the discrimination faced by people with leprosy.
Dr Khalid said the public often look in disgust at people with leprosy because of the latter’s physical appearance.
Leprosy can cause, among others, for patients to lose or develop lesions and nodules on their skin, severe defects on their hands and feet, and have a f lat nose due to the destruction of the nasal cartilage.
“On the other hand, patients are so afraid of being ostracised for their appearance that they are afraid to mingle with the public,” he explained.
Although there has yet to be new leprosy cases among the locals in recent years, many in the society remain ignorant on the disease and believe it to be a hereditary disease.
The more unenlightened ones would claim it to be the result of a “curse” upon those afflicted.
“To reduce the stigma, we have now opened PKKN to the public. We find that that people have become more aware of the disease after numerous campaigns by the media, NGOs and other parties.
“We have also opened up a Leprosy Gallery for the public to learn about the history of the disease,” said Dr Khalid.
In an effort to further educate the public, the Sungai Buloh Hospital has teamed up with NGOs to host Open Days annually to enable the public to get to know leprosy patients and the reality of life at the centre.
The PKNS General Manager Azlan Md Alifiah said the visit was part of its corporate social responsibility programme in conjunction with the Chinese New Year.
“We feel compelled to make the visit after realising that societal stigma against those with leprosy is still high. We are hoping that this visit will raise the awareness to those out there that the residents here are fully healed.
“Let us give them the chance to live normally, like we do,” he said, adding that many of the residents at the settlement had been disowned by their family and cast away from society.
During the visit, PKNS donated two water filter machines worth RM7,400 as well as distributed ang pow packets and Mandarin oranges to the residents there.
Sungai Buloh Hospital Director Datuk Dr Khalid Ibrahim said leprosy used to be an untreatable disease that left victims maimed and scarred for life.
“Leprosy patients would be segregated from society and placed in settlements. However, today, the disease is easily treatable using a therapy of antibiotics,” he explained.
Also known as Hansen’s disease, leprosy is caused by the Mycobacterium leprae infection. (The name Hansen’s disease is taken from the person who discovered Mycobacterium leprae, G.A Hansen).
It is diagnosed by skin lesion consistent with leprosy and definite sensory loss or by positive skin smears.
The skin lesions can be one or multiple which causes patients to experience sensory loss (numbness) or reddish spots that are not itchy.
This form of leprosy is not contagious, but can cause physical defects if not treated in time.
Positive skin smears, meanwhile, is an infectious form of leprosy with white or reddish spots spreading across the body.
Dr Khalid said the early signs would start from the earlobes and face.
PKKN came to be known as the “Valley of Hope” in the 1950s and is today not only the settlement for leprosy patients but is also the research and containment centre for the disease as well.
It was the most well-planned, equipped and humane leprosy settlement in the world when it was first established.
The centre started functioning as the Sungai Buloh public hospital in 1971 with 15 wards for leprosy patients.
The management of PKKN was handed over to the Sungai Buloh Hospital Director in 2009.
By November 2012 there were only 202 leprosy patients aged above 50. These patients were moved into chalets to lead a more fulfilling life by engaging in routines like gardening and landscaping.
PKKN also spearheaded the discovery of the vaccine to prevent leprosy made from the gum found on the Setumpol fruit. Under the Leprosy Enactment of 1926, a leprosy settlement was created at Bukit Lagong. It was a distance from the city centre so that its resident would be segregated from society.
In 1930, 2,000 patients were registered at the settlement today known as PKNN.
As society then treated them as outcasts, the patients turned to each other for comfort, friendship and a sense of belonging.
They formed a strong community, even establishing security volunteers from among them, organising sports and cultural festivals and celebrating festive seasons with each other. They also had their own currency.
The Setumpol tree (Hydnocarpus wightiana or Chalmougra) is widely planted around the settlement to remind of its importance in treating leprosy. Its seed and oils are used in the treatment of leprosy before the discovery of Dapsone.
The settlement gas been gazetted as a heritage site. - Bernama