SASAKAWA MEMORIAL HEALTH FOUNDATION
Japanese
Character sizeLargeSmall

WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: Shared Passions

International gathering forges bonds during three-day retreat in Japan.

photo
Animated discussions at Hotel Brush Up

A three-day retreat held at the end of January near Mt. Fuji was an opportunity for people affected by leprosy and supporting organizations from around 10 countries to get together in a relaxed atmosphere, share experiences and strategize.

The retreat was organized by Sasakawa Memorial Health Foundation, taking advantage of the launch in Tokyo of this year’s Global Appeal to End Stigma and Discrimination against People Affected by Leprosy, which saw a number of invited guests come to Japan for the occasion.

Before arriving at the wonderfully named Hotel Brush Up in Gotemba, Shizuoka Prefecture, participants called at two nearby sanatoriums. National Sanatorium Suruga was the last leprosarium to be established in Japan, opening in 1945. It was conceived during World War II to treat Japanese soldiers who developed leprosy at the front. Of the 65 remaining residents, with an average age of 83, eight are former soldiers.

Koyama Fukusei Hospital is Japan’s only remaining private sanatorium for leprosy and now also serves as a general hospital and hospice. Founded in the late 19th century by French Catholic missionaries, it is home to seven people affected by the disease. One of these is Tokio Fujiwara, who said he had first learned of a cure for leprosy by reading Miracle at Carville. He was thus delighted to chat with one of the visiting group, Jose Ramirez, Jr., who had been treated at the Carville sanatorium in the United States and knew author Betty Martin well.

BUILDING PARTNERSHIPS

The retreat considered two themes: strengthening the participation of people affected by leprosy in leprosy services, and building partnerships for sustaining leprosy work and utilizing insights bequeathed by the disease experience. Some interesting examples emerged from each.

In Ethiopia, ENAPAL (the Ethiopia National Association of People Affected by Leprosy) is not so much strengthening leprosy services but actually creating them in areas where government leprosy services are lacking, and teaching government health workers about leprosy.

In Indonesia, PerMaTa says it refers many suspected cases to health officials. This organization of people affected says of its ability to detect cases, “We know by ‘smell’, by experience,” but finds itself frustrated at times by what it says is the authorities’ passive approach in the face of PerMaTa’s activism.

In Brazil, a search for new partnerships led MORHAN (the Society for the Reintegration of People Affected by Hansen’s Disease) to an association of sex workers. MORHAN trained them to recognize symptoms of leprosy in their clients and what to tell them. “They were happy to be approached — no one had ever asked for their help before — and they detected more cases than doctors,” said Artur Custodio.

“Don’t talk about leprosy; talk about what it means to be a human being.”

In China, where JIA (Joy in Action) runs work camps in leprosy recovery villages to improve the residents’ quality of life, Ryotaro Harada believes the way to appeal to new partners is to shift the focus away from the disease itself to themes such as resilience and survival. “Don’t talk about leprosy; talk about what it means to be a human being,” he said, adding that JIA is now starting to interest companies in the potential of work camps as opportunities for team building and self reflection.

Putting in an appearance on the final morning was Misao Ojika, the head of the Suruga sanatorium residents’ association, who had been prevented by a cold from joining the proceedings earlier. He said he was delighted to meet so many people committed to leprosy work. “I couldn’t understand what you were saying in English, but I could feel your power and passion,” he said. “That makes me very happy.”