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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Travels in Central Asia

One lady I met entered the sanatorium at age nine and has spent 67 years there.

Most of the elderly residents have lived in Krantau for decades, but were able to marry and start families - in stark contrast to the situation in my own country, Japan. Among those I met was a lady who entered the sanatorium aged nine and has spent 67 years there. She has children, grandchildren and great grandchildren living nearby, and greeted me with a warm smile. Another lady wiped back tears as she proudly told me that her daughter, a university student, is a champion of the Russian martial art known as Sambo.

Because of growing water shortages and frequent power cuts, there are plans to relocate the leprosarium to an outpatient clinic closer to Nukus. I was taken there on my way back to the city. I looked on as Dr. Khamraev, who used to be Karakalpakstan's minister of health, explained the plan to some of the outpatients. He told them they could look forward to better services once the facility was built, although I had the impression that some further explanations would be necessary. Be that as it may, it seems likely that, within a year of my visit, there will be no one at the Krantau facility.

TAJIKISTAN (July 8-10)

Although the distance from Tashkent to Dushanbe, the capital of Tajikistan, is only around 300 kilometers as the crow flies, it proved easier to fly via Istanbul - 3,000 kilometers to the west - to get there. Arriving early in the morning, I was met at the airport by Dr. Azizullo Kosimov, the head of the Republican Center of Venereal and Skin Diseases, whom I had met the previous year in Astrakhan. He was especially pleased to see Dr. Drabik again.

Following the breakup of the Soviet Union, the country was plunged into a civil war that lasted until 1997 and claimed 50,000 lives. It was in the midst of this tragic conflict that Dr. Drabik and her late husband made their first perilous visit to Tajikistan and met Dr. Kosimov. As a result, they are very close, and a picture of the Drabiks sits on Dr. Kosimov's desk "so Romana is always looking over what I do."

On my first day in Dushanbe, I had lunch with the WHO country representative, Dr. Pavel Ursu, and called on Deputy Health Minister Dr. Rahmonov S.B. As I had been hoping to fly to Khorog near the border with Afghanistan to see the situation there for myself, I was disappointed to hear the ministry advise against this.

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Visiting with residents of Honaka Leprosarium

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The approach to the leprosarium

Regarding the border situation, Dr. Rahmonov told me that in 2012 over 1,000 Afghans had received treatment for various diseases in hospitals inside Tajikistan. As for a proposal to build a leprosy clinic to treat patients from Afghanistan, he said this would be something to discuss when ministry officials next meet their Afghan counterparts. He pointed out that Tajikistan enjoys a close relationship with its neighbor and said that many Tajiks live in Afghanistan: "It is a brother country to us."

On July 9, I visited the country's only leprosarium. It is home to 15 of the 49 people currently on the leprosy register in Tajikistan, although all have been released from treatment.

Honaka Leprosarium is in Gissar district, about 90 minutes by car from Dushanbe. It was relocated from the capital as the city grew and stands on 50 hectares of land close to the splendid Kofarnigan River. Although somewhat isolated, the setting is very pleasant.

As I had found in Uzbekistan, many of the residents raised large families. One couple who met and married in Honaka and have lived there for 50 years, told me they have five children and 13 grandchildren. Under the policy in place in Soviet times, the children were sent away to boarding school to prevent them getting the disease, although they were allowed to visit their parents. Four of the couple's five children went to university, and one now works in television.

"We keep up with what's going on in the world," they told me. "When we hear about the incessant conflicts, we are truly grateful for the peace that we enjoy here."

Another resident I spoke with told me he had qualified as a science teacher before being diagnosed with leprosy in 1961. He has lived in Honaka for 40 years, where he raises poultry and sheep. "I studied very hard when I was a student, and this is the fate that awaited me," he said.

According to Dr. Kosimov, the last person to be treated for leprosy in Tajikistan was diagnosed in 2001 as the result of a survey, although he hesitates to say there have been no cases since. "We really need to carry out another large-scale survey, but financial constraints have prevented us." He is particularly concerned about the mountainous Pamir region, where 80% of the residents of Honaka Leprosarium originated.

On my last day, I visited Dr. Kosimov's center in Dushanbe, where 100 dermatologists and ophthalmologists had gathered for a conference he had organized. I spoke about my work as Goodwill Ambassador and Dr. Drabik gave a lecture on diagnosing leprosy. As the next day was her birthday, she was treated to a rousing chorus of "Happy Birthday."

Regarding Afghanistan, I heard later that a German NGO reported 38 new cases of leprosy in five districts there in December 2012 alone. If that is the situation, then this suggests there must be more undiagnosed cases. Whatever the reason, it is a tragedy when people who require treatment are unable to receive it. I hope peace will return to that country soon.

TURKEY (July 11)

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On my way back to Japan, I had a morning in Istanbul and took the opportunity to revisit what had previously been Turkey's only leprosy hospital. In 2007, I had met Professor Turkan Saylan, her country's leading leprologist and the director of the hospital until 2002. Following her death in 2009, the health ministry had moved to shut the hospital down.

But supporters took the ministry to court to have it reopened - in part because they felt this specialist facility is needed, but also to preserve the memory of Professor Saylan. The legal action eventually succeeded and the hospital reopened - but as a leprosy, dermatology and venereal diseases hospital.

Dr. Ummuhan Kaya, a dermatologist and protégé of Dr. Saylan, told me that Turkey has recently been seeing some new cases of the disease - 13 in the last two years. "Doctors in Turkey don't know too much about leprosy. There is often misdiagnosis. Even my friends who are doctors ask me if leprosy still exists. I feel we are facing a leprosy problem again and we need to look into this more deeply."