Institute for War and Peace Reporting | Giving Voice, Driving Change

Azerbaijan's Hidden Lepers

Forgotten by the outside world, 36 leprosy sufferers are fading away quietly in the small Azerbaijani village of Umbaki.
By Shahla Abusattar

Every morning, the women of Umbaki draw their eyebrows with black eyeliner in front of the mirror, striving to recreate the features they have lost. Their withered fingers often disobey them, and their faces end up looking like eerie masks.


Here, in Azerbaijan's Gobistan desert, whether by accident or design, the former and current patients of the Umbaki leprosarium, 80 km from Baku, are now virtually forgotten by the outside world and receive little government or international help.


The centre's 36 inmates will be celebrating World Leprosy Day on January 26, but there will be no cameras recording the event: patients refuse to be photographed. "We don't want time to be fixed," one of them told us. "It stretches like an eternity anyway."


The first and only facility for leprosy sufferers in the southern Caucasus was established in the capital in 1926 to house upwards of 300 lepers from Azerbaijan, Armenia and Georgia. The hospice was relocated several times before it was moved to the outskirts of the village of Umbaki in 1957.


Azerbaijan's only leprosy doctor, Vagif Abdinov, who was head physician at the Umbaki hospice until the mid-1990s, told IWPR that the leprosarium has fallen on hard times.


The buildings are in dilapidated, the large club and the library have both gone. But the worst thing is the centre's diagnostic laboratory has been out of operation for five years. "This means that new patients will have to travel overseas to have their diagnosis confirmed and the nearest similar facility is in Astrakhan, Russia," Abdinov said.


Doctors from Turkey's National Association for Leper Assistance and other international organisations, such as Medicines sans Frontieres, occasionally visit the Umbaki inmates. But, compared to wages in Baku, salaries for doctors here are low and there is little incentive for medical staff to come from the capital to work.


The Umbaki complex consists of four ramshackled single-story buildings with a verdant courtyard, surrounded by a high fence. The only way to the colony is on a rickety bus, which makes the round trip here from Baku once a day.


Access to the compound is restricted. Journalists are only allowed inside by written permission of the minister of health. The few reporters who have seen the inside of these walls have come under the auspices or together with international charities.


Reluctant to go through the bureaucratic ordeal of obtaining a permit, we decided to risk going to Umbaki independently. To our astonishment, we simply walked in and no one tried to stop us.


The current residents are all elderly people. The oldest is 85.


Zarifa Seidova, 60, is one of the veterans of the leprosarium. She has no eyebrows or eyelashes. Her face is lifeless with puffs around the eyes. Her fingers are crooked.


Zarifa, a mother of three perfectly healthy daughters, was send to the colony 36 years ago, and gave birth to her fourth daughter here. She went to a regular maternity hospital during her pregnancy, and the doctors took her daughter, and sent Zarifa back to Umbaki. She visits her grown-up children every year.


Leprosy is a germ-based disease that attacks the extremities of a person's body. It makes a person's face large, bloated and covered with sores. You can no longer identify the eyes, the nose or find the eyebrows on such a face.


A Leper's arms and legs gradually lose feeling. They feel no pain, heat or cold. Their nerve ends, skin and muscle cells die, and their bones crumble.


Leprosy is now a fully treatable disease and in most cases in Azerbaijan it has been halted before doing great damage to sufferers. Official statistics show that no one has contracted the disease in the country for 10 years.


In addition to the Umbaki inmates, there are 55 other lepers registered in Azerbaijan, who are allowed to stay with their families. All are required to visit the colony for examination every year.


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The main problem for the Umbaki patients is that there are not enough medicines to treat them - and that they remain the victims of fear and prejudice


The lepers know only too well that healthy people are afraid of them and are grateful to those who are brave enough to greet them with a handshake.


Families are allowed to visit at any time, but they rarely come, so the inmates do their best to make their life at the hospice as comfortable as they can. Some breed poultry and rabbits.


They celebrate holidays like everyone else, building fires at Novruz, the spring festival, and slaughtering sacrificial animals at Kurban Bairam. They are even permitted to drink a little alcohol on holidays.


Once one of the patients made a bet with his fellow inmates that he would find and marry a healthy woman. And he did. He wed one of the hospice nurses. "This happened more than 30 years ago. They have healthy children now who come to visit their father at the hospice. They are not afraid of contracting leprosy by being around us," one patient told IWPR.


Most of the residents of Umbaki end their days here, and are buried at the unkempt, overgrown cemetery next to the hospice.


The head doctor of the Umbaki leprosarium, Vidadi Aliev, refused to meet us. When they finally found out we were journalists, the nurses said we should to leave immediately. "This is a restricted area, and our head physician's policy is never to talk to journalists," they said.


It is a small consolation for Umbaki that it does not lack for natural gas or water. The local government has ensured a steady supply of both.


Nor is the centre likely to close soon, if only because it is the only employer in Umbaki and paying steady wages, employing over 30 locals in a variety of capacities, from janitor to nurse. The locals also help the inmates work their vegetable patch and take care of their farm animals.


"The hospice is a desirable place to work, paying higher wages than others. Nurses earn about 30 US dollars a month, doctors up to 60," said Tofik Poladov, the head of the village administration of Umbaki.


Shahla Abusattar is a reporter for Azadlyg newspaper in Baku. Mamed Suleimanov is a reporter for Novoe Vremya newspaper in Baku


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