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Leprosy loses age-old stigma

Leprosy loses age-old stigma


Tracey Shelton

Bou Souphal (right) from a project called Social Economic Rehabilitation for Leprosy visits former patient Lay Houth at his garbage recycling business. Once institutionalised for his affliction, Lay Houth is now a successful entrepreneur in Kampong Cham province.

Facts about leprosy

  • Leprosy is not hereditary or sexually transmitted.
  • Leprosy is not fatal.
  • Leprosy does not rot the flesh or cause fingers to fall off.
  • Leprosy is not easy to catch. In reality, an estimated 90 percent of the world’s population is naturally immune.
  • Only around ten percent of leprosy patients incur visible disabilities. After treatment, a patient is totally cured even if disability remains and is no longer contagious. Leprosy treatment is free in Cambodia.

Signs and symptoms

Leprosy begins as numb, discolored skin patches. Left untreated, it begins to attack the nervous system, particularly within the limbs and face. In its worst form, motor skills in the limbs decrease; sweating stops and skin begins to dry out. Feeling in the extremities is lost. Muscle weakness can lead to clawed hands and feet that drop down toward the ground, causing patients to drag their feet.

With no feeling or sense of pain, patients frequently injure their hands and feet without knowing it. Unfelt wounds go untreated, dry skin cracks, callous forms. Digits can literally be worn down or lost through injury, leading to the common misconception that leprosy rots the skin. Nerves in the face can also be affected, eventually leading to blindness.

Chey Chourp was a well respected monk within the community until at age 23 he was diagnosed with leprosy. It was 1963 and his sentence was a lifetime of confinement, social fear and discrimination.

He was sent to a leper colony in Kampong Cham known as Treoung village. The only work available was stone breaking for road construction, but this work is dangerous for leprosy patients who commonly have no feeling in their hands.

With no pain, his fingers were repeatedly damaged and often left untreated. Chourp bears the scars, showing hands with barely any fingers left.

“At that time, life here was very strict,” he said. “No one was allowed to go out and people from outside were afraid to come in. I felt hopeless. I didn’t want to live anymore.”

Despite medical breakthroughs, Chourp’s story of confinement and isolation still recurs in many countries.

Fear and misunderstanding have kept segregation policies in place in counties such as India, were by law leprosy patients cannot travel by train or apply for a driver’s license, and China, which has refused to allow anyone having had leprosy to attend the Beijing Olympic Games.

But for Cambodian leprosy patients, times are changing as the Kingdom leads the way with a more modern approach to leprosy treatment.

Dr Lai Ky, Officer in Charge of the National Leprosy Elimination Program (NLEP), said that prior to discovery in the 1980s of a multi-drug therapy (MTD) that completely cures a patient in six-12 months and stops the risk of spreading infection within days, segregation was international policy.

The World Health Organization (WHO) has since adjusted its policy, stating that treatment should be incorporated in the mainstream medical system.

Dr Lai Ky says that now Cambodians in every province can be treated for leprosy in their local health centers, remaining in their communities.

“Through integration, awareness and knowledge is rising,” he said. ”Children on treatment can still attend school. People are not afraid anymore. The stigma is decreasing.”

Pam Gantley, manager of the International Committee of the Order of Malta’s Kien Kleang Leprosy Rehabilitation Center in Phnom Penh, partly attributes Cambodia’s advanced policies to the short lifespan of the current medical system.

Having been reestablished in the 1980s after MDT had been discovered, the center began with an inclusive rather than an exclusive approach to leprosy patients, she said. Segregation policies were never reinstated.

“If you don’t separate people in the first place you don’t need to reintegrate them,” said Gantley. “It makes the job a lot easier.”

Despite the progress, much work remains, Lai Ky said. The number of new cases is declining steadily but there are still around 400 detected yearly.

In 2007, 11.4 percent reached grade 2 disability levels – visible and irreversible disability – before the disease was detected. This indicated detection methods still needed to be improved, Lai Ky said.

Early detection means the disease can be cured before the crippling effects take hold.

The first step when a new case of leprosy occurs is to visit the family and the village and check for other cases, said Bou Sophal, who began directing a pilot project in 2000 now known as Social Economic Rehabilitation for Leprosy (SER).

It is important, Sophal said, not only to teach people what symptoms to look for but to inform them of the coonsequences of leaving the disease untreated. The stigma associated with leprosy causes many to remain silent, he said, so accurate information is the only way to overcome this fear.

“Before I began the SER program, I worked with so many patients who had been cured of leprosy but had felt no change in their lives,” Sophal said. “They were still called khlung [a derogatory term for lepers]. The bacteria were gone but the stigma and fear remained.”

Sophal strives to reassure family and friends in the village that patients under treatment are not contagious and pose no risk by remaining within the community.

The program provides self-care methods and advice to those still suffering the irreversible effects of leprosy. Simple things such as taking care not to touch hot objects like pot handles, wearing shoes to prevent sole lacerations, and cleaning and caring for wounds can prevent further disabilities in patients with no pain reflex.

Through SER, Sophal said he has personally granted small business loans to around 300 patients eager to reenter the job market as food vendors, moto drivers or pig farmers. 

“We want people to change the attitude from charity to responsibility,” he said. “We help them to be free and regain their independence. It makes me so happy when I see their success.”

For 34-year-old Kong Sitha, there is no doubt that attitudes have changed dramatically in recent years. In 1991, she and her sister, also diagnosed with leprosy, moved to Cambodia’s only remaining former leper colony, Treoung village in Kampong Cham, from their home 50 kilometers away, even though treatment was available at the local clinic.

Fear and discrimination from neighbors forced them to move, and even after treatment they never returned to their home village. Instead, the pair set up a restaurant on the roadside just outside of Treoung, with a small loan from SER.

Sophal was a big supporter of the restaurant. Always stopping with friends and colleagues, many people would ask him why he wasn’t afraid to eat there.

“I take the opportunity to explain to them there is no risk.”

Over time, knowledge replaced fear and the restaurant became popular, particularly among truck drivers who frequented the busy national highway.

Now both sisters are married to former customers, both truck drivers, and Sitha recently became the mother of a happy, healthy baby girl.

“I never thought it would be possible to live a normal life, but now I’m just like other people,” she said with a broad smile as her daughter giggled in her arms.