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Dilfruz's New Life

A Kyrgyz woman finds hope for herself and her HIV positive son, and gives hope back to others

Kyrgyzstan, Bishkek/Osh/Nookat - Dilfruz (32) has begun her third life. “Hope has returned to me, and I see the chance of a future,” she says now.
In her first life, Dilfruz was an “ordinary person” – she had a husband and three children. She worked as a teacher in a village school in the Nookat district of Osh province, Kyrgyzstan. As is expected in traditional Uzbek communities in Osh Region, the daughter-in-law lived in the house of her husband’s parents.

In April 2007, Dilfruz’s life was divided into two parts – before and after HIV. Her eight month old son was infected in the intensive care wing of the Nookat District Children’s Hospital. The boy had a high temperature for a long time, and the family were forced to sell their plot of land to pay for the medical services needed to save the boy’s life.

Dilfruz rushed between the Nookat hospital and the children’s hospital in Fergana (Uzbekistan) to help her child. It was in Uzbekistan that she found out about the terrible diagnosis. It was a terrible verdict for her at that time because no one in her community, including Dilfruz knew about this disease. The information people were getting until that time was that HIV/AIDS is a disease of only drug addicted people and commercial sex workers. So stigma against the virus was and still is a huge challenge in the country, especially in village communities of the Southern regions.

Back in Kyrgyzstan, where after the HIV outbreak in the Osh region all the people who had come into contact with the disease were tested, she had another shock – she found out that she herself was HIV-infected. When, on arrival from Russia, Dilfruz’s husband found out about her diagnosis and that of their son, he beat her severely and threw her out of his parents’ house. “Go and live in the place you got AIDS,” he shouted at her as he kicked he out. 

Dilfruz got another shock when she arrived at school in September. “By that time the whole village – people from 7 to 70 years of age – knew that we where HIV positive,” she remembers with pain. A local medical worker who got this information from Osh AIDS Center spread it around the community. “And so my former colleagues stood at the school threshold and didn’t let me into work.  Everyone in the village pointed at us and avoided us like lepers.”

In a flash, Dilfruz lost all the foundations of her life – family, work, and hope for her future and for that of her little son.

“But I was lucky,” says Dilfruz. “My father-in-law is a man with a big heart.  He came to my mother’s house, took me and my three children, including the one with HIV, in his arms and took us back to his house.  And he told my husband – if you don’t like it, get out yourself!”

More than a year passed, and in that time many tears were shed in the extended family, where all 12 grandchildren of Dilfruz’s parents-in-law are loved equally.  All the money made from selling the plot of land had been spent on the HIV-positive child, and his condition had not improved.

Soon Dilfruz’s family found out that about 80 other children from Osh, Nookat, Karasu and Aravan had also been infected with HIV in the medical establishments of Osh Region.  More than twenty other families are dreading confirmation of diagnoses.

“My third life began when UNICEF, together with the Osh Deputy Governor, extended a helping hand,” says Dilfruz.  “We had been knocking on various doors for almost a year and a half, and we were turned away everywhere.  The doctors in Nookat didn’t know how to treat our children, and they sent them to the Osh AIDS Centre, where they didn’t help us straight away either.  We had to travel there a number of times before they prescribed anti-retroviral therapy for us.”

The parents of the HIV-positive children despaired of receiving any kind of support and locked themselves away in their grief.  But UNICEF worked hard to gain their trust.  In partnership with the Osh Regional Administration, NGOs and local government, serious work has been carried out in the region since April 2008 to reduce stigma and discrimination against people living with HIV. This work will be continued until creation of an enabling environment for families living with HIV.

Under the aegis of UNICEF, in July 2008 a meeting was held of parents of HIV positive children from Shymkent, Kazakhstan and Osh Region, Kyrgyzstan at Lake Issyk-Kul, Kyrgyzstan. During the meeting, parents discussed how to improve their lives and those of their families and children, in particular how to cope with stigma and discrimination. Dilfruz and her father-in-law, who both took part in the discussions, returned from Issyk-Kul as different people. They no longer flinch at the sidelong glances of villagers, and are not afraid to answer their questions. 

And Dilfruz gained even more enthusiasm from a meeting of Nookat parents of HIV positive children with Aziza Turdueva, at that time Deputy Governor of Osh Region. She saw how the Deputy Governor, a woman with great authority for social affairs in the region, took HIV positive children in her arms and kissed them, showing her compassion for families living with HIV and understanding of the issues they face.

“It is impossible to believe, but our relationships with our own children have changed after these meetings,” says Dilfruz. We have come to believe that our children have a future, that they will go to kindergarten and then school, and will grow to become adults. “I dream that my son will become a doctor,” she says.

Even more surprising for Dilfruz is that parents of HIV positive children have begun to come to her home from distant villages. People come whom Dilfruz has never seen before, whose names she has never heard.

“I can’t understand how they learned about me, and how they found my address, but I am so happy that I can help people,” proudly says the woman who has overcome her grief and her resentment, who has overcome so many of the barriers and trials of her 30 plus years of more suffering than most people go through in their whole lives.

People come to Dilfruz for advice and she is happy to give it.  Having received hope, she gives hope to others. The woman who grew up in a village and had never taken part in training events now carries out seminars and training events day after day and is not discussing with people the issue of how to create their own association. Having never studied psychology, she gives psychological help to people like herself and this help is accepted with love - because it is given from one peer to another.

written by Olga Grebennikova, UNICEF Kyrgyzstan





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