WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Searching for the Past

The Goodwill Ambassador visits a couple of islands with a past linked to leprosy, and meets with people affected by leprosy in Vietnam, Palau and Malaysia,

Saying hello to a resident of Ba Sao treatment center

Vietnam (October 31)

During a visit to Vietnam in October, I took the opportunity to go to the Ba Sao Leprosy Treatment Center in Ha Nam Province, about 100 kilometers south of the capital, Hanoi. Vietnam eliminated leprosy as a public health problem in 1995, but continues to see new cases of the disease, including 400 so far this year.

The Ministry of Health and the National Institute of Dermatology and Venereology run 20 leprosy sanatoriums nationwide; Ba Sao is one of these. It is home to about 50 persons affected by leprosy, ranging in age from their 50s to their 90s. Nearby is a small hamlet that is home to more people affected by leprosy and their family members.

On arrival I first visited the wards. Among the residents I met was Dao, 61, who has lived at Ba Sao for more than 30 years. Although cured, she is suffering from various chronic ailments. Now that her husband is dead, she has no family.

As I toured the center, I saw from the window a brand new building. This turned out to be a bathroom and shower unit that had been built over the summer by volunteers. They included students from Waseda University in Japan, one of whom is now working part-time at my office in Tokyo.

Moving on to the hamlet, I passed the time of day with a number of the residents. They included Be, a woman in her 80s, and Qvet, who lives next door to her daughter and family, who are building a new house. The government provides a monthly allowance to those living in the hamlet, as well as two meals a day. To supplement this, many of the residents raise chickens, pigs and cows.

Although living conditions were comparatively good, the community is isolated. Stigma remains an issue, it seems, and must be addressed.

Raibyo-shima, where people with leprosy were sent during the era of Japanese rule

Palau (November 11)

On November 11 I traveled to Palau in Micronesia. My destination was Koror Island, seat of Palau's capital until 2006.

Palau has a population of around 20,000. Currently it has 6 registered leprosy patients. Although my stay was brief, I arranged to meet with some of those undergoing treatment. They included a 17-year-old girl whose mother took her to hospital when they realized she had no sensation on a patch on her leg. Another man told me his uncle also had the disease. I spoke with a nurse, who said she pays a visit to each household to make sure the patients are following their treatment.

I was interested to discover that near Koror was an island once known as Raibyo-shima, or leprosy island. The name comes from the old Japanese term for leprosy, and dates back to when Palau was under Japanese rule. Keen to pay a visit, I traveled the 1.6 kilometers in a small motor boat. I was told it would not be possible to land, but I was able to wade ashore.

Once on land, I was confronted by a jungle-covered hill. I discovered a small wooden staircase in the undergrowth and cautiously proceeded to climb. The steps soon petered out, but I continued anyway. I searched for signs of where people might once have lived, but wasn't able to find any evidence. On the way back to the boat, one of my traveling companions inadvertently broke one of the wooden steps. Thus is history obliterated, I thought.

Visiting Pulau Jerejak in Malaysia, where few traces of its association with leprosy remain

The real name of Raibyo-shima is Ngerur Island. Only later would I learn that the remains of some buildings as well as some graves were to be found on the other side of the island. I learned also of the existence a man in his 80s who had been sent at the age of 10 to Raibyo-shima, where he had remained for several years. A doctor brought medicine once a month, and rice and tinned foods were also delivered. The islanders cultivated taro potato, sago and sweet potato. I understand the man, who later worked as a construction worker on Guam, is in good health.

Malaysia (November 20-22)

On a visit to Malaysia in late November, I made a point of visiting Pulau Jerejak, a small island lying off Penang. Now home to a resort, Jerejak's past includes spells as a quarantine station for immigrant workers, a hospital for tuberculosis patients, a prison and a leprosarium.

It was in 1871 that Jerejak was selected by the Straits Settlements, the British territories consisting of Singapore, Penang and Malacca, as a place to isolate leprosy patients. It fulfilled this function until 1969, when all remaining patients were transferred to Sungai Buloh leprosarium near Kuala Lumpur. Between 1969 and 1993, when it served as a prison, the island was dubbed the Alcatraz of Malaysia, after the infamous prison in San Francisco Bay.

As with Sungai Buloh, Jerejak has an important place in the history of leprosy in Malaysia, yet its past function as a place of isolation for those with the disease is not widely known. My guide to the island, 29-year-old Faisal Omar, who was born and raised on Penang, was taught nothing of this aspect of the island's history when at school. In fact, he first heard about its leprosy connection when he accompanied an Indian visitor to the island, who told him he had once worked there as a doctor.

There is mention of Jerejak in a book published in Japan in 1942 by a Japanese leprologist. When he visited in 1933, there were 765 patients, among them 601 Chinese and 128 Indians. The sanatorium was apparently divided into different sections based on factors such as race and the degree of disease severity. The only form of treatment was chaulmoogra oil.

Today, little remains of the island's leprosy past. One can only conclude that these historical sites have been obliterated. By whom, and for what reason? It is hard to fathom. Some reports suggest that the buildings were demolished and sold off as scrap.

It is also a struggle to preserve the history of another important site near Kuala Lumpur, Sungai Buloh, which I visited on this trip. To expand a university that has already been built on part of the site, the authorities are asking about 300 people to move to separate accommodation.

Sungai Buloh was once a self-contained community with its own schools, hospitals, cinema, fire department and local government. At the time of my visit, the population numbered 232 persons. Of these, 113 occupied some of the 409 chalets still standing, while the remaining 119 were hospitalized with various ailments. Many of the remaining residents are elderly and disabled. Those that are able to work grow plants and cultivate trees for sale, an activity for which Sungai Buloh is famous.

I met with five male residents of Sungai Buloh. They had been requested to vacate their homes to make room for the expansion of the university. They told me that the eastern section of Sungai Buloh had already been destroyed, but that they were keen to see the remaining buildings preserved. "We just want to be allowed to live in peace."

There are conflicting forces at work here: to preserve the site for its historical significance and allow the residents to remain where they choose, versus redeveloping the land in the interests of the population at large. It was society that forced these people to live here in the past; I feel they should not now be forced anywhere against their wishes.