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In under 5 mortality rate was recorded in the CEECIS region from 1990 to 2011.
Positive children, positive lives
Seeing her son coming back from school in a bad mood, Mukhayyo’s mood changes as well. She quickly rinses her hands that were sticky with dough and approaches her son. «Are you all right, my son? Did someone offend you again», asked Mukhayyo. «No,» says her son.
Sarvar tosses his backpack onto the wooden bed and enters the house. His mother, who follows him, sees him lying on his bed, facing the pillow. She sits on the corner of the bed and starts stroking his head. «Did someone say bad words to you in the school», this time she asks him softly.
«Mom, today all of my classmates gave blood for analysis, but the doctors told me that you are not allowed to,» said her son innocently. He continued narrating his story ‘our sports teacher said that I’m «free of the class». Everybody played football, but they did not let me play with them. Why? Because I’m sick? Is it such a bad disease? Yesterday I read on the Internet that people who got this sickness don’t live long. Is that true? Why do my teachers give me strange looks? Since they didn’t let me attend the class, my friends keep asking me what sickness I have. Mom, I won’t go to school anymore.»
Mukhayyo lets out a deep sigh. Unsuccessfully, she tries to find a way to explain to her son who an HIV-positive person is.
Bringing Positive Voices Together
On July 13-17 and July 21-25, the Republican AIDS Center to fight AIDS of the Ministry of Health of the Republic of Uzbekistan and UNICEF jointly organized training workshops in Tashkent city, titled «Living with HIV - Health and the Essentials of Support». The trainings put together 54 adolescents- boys and girls from different regions of the country, who like Sarvar were living with HIV. It also helped their parents find answers to their questions.
According to Kamila Fatikhova, UNICEF Consultant, the main goal of the event was not to only provide information about HIV and AIDS to children and their parents, develop the participants’ responsibility towards their health, and create conditions for them to adapt to their diagnosis, but also to provide them with the psychological and group peer support.
«This training is organized for you to learn how to support other HIV-positive young people. Today, your role in that regard is very important,» said Robert Fuderich, UNICEF Representative in Uzbekistan. He also added, «I am glad to see your efforts towards achieving that noble goal. I would like to also thank your parents, who are present here, who love you and who have been supporting you on your difficult path for many-many years.»
We Are Not Alone: Positive Children - Positive Stories:
The training was organized in two groups: for children and for their parents.
The first day of the training was called «My positive life». During the day the children told their stories to their peers. They played several games such as «Living with HIV», «My treatment with ART», «Visiting a doctor», in the process of which they had a chance to talk to a professional doctor and get answers to their questions. The second day of the training was titled «Information about my health», during which the participants were provided with useful information on topics such as «Healthy nutrition», «Negative effects of drinking, smoking and drug using», «Fundamentals of healthy lifestyle», and «Tuberculosis and its prevention».
«Two years ago, I had toothache and went to see a dentist. I got my treatment but I started feeling sick. Later on, I underwent a medical examination and it was revealed that I had the HIV virus. I’ve got some medical treatment and started taking pills that were prescribed. However, I wouldn’t understand why I had to take them regularly. During this training I’ve learnt lots of things about HIV and AIDS. I have made lots of friends during these five days. And most importantly, I’ve discovered that I’m not the only one. I’ve learnt that I can live with HIV just like all of my friends do. I just have to follow the doctors’ instructions and live a healthy life. If I do so, I’ll be able to realize my dream of becoming a doctor and healing all sick children. I now know about my responsibilities and rights,» says Sarvarbek, a 15-year-old participant of the training.
The third day of the training was titled «My skills», during which the participants attended sessions such as «Developing the volunteering skills at the Daycare Centers for children and adolescents with HIV», «Assisting by peer support and peer education», and learnt how to support their friends who have an HIV-positive status.
«My friends at school and my classmates at college would try to avoid me because I used to go to hospital very often. They would say, ‘You must have a bad disease’, and would look suspiciously at me,» says Nigora, another participant.
«When I was a child I was hit by a car and taken to the regional hospital, where I was treated with blood transfusion. Later, it was revealed that I had HIV. When I was in the 8th grade, my mom would tell me about my disease. Then I was placed under the regular supervision of a doctor. Now, I’ve finished my first year at college. Ever since I was a child, I have always admired sports. And I dreamed of becoming an athlete. However, my father is an accountant and he wanted me to become an accountant too. At college I was not allowed to do heavy physical work. Therefore, I didn’t manage to make any friends. After attending this training, I understood that I was an ordinary girl just like other girls, and most importantly, that I’m not alone. During the training our trainers, along with the visiting doctors, explained that we can live a long life even with an HIV-positive status, given that one adheres to the rules of a healthy lifestyle and takes the prescribed medicine on time and regularly. Importantly, they taught us how to explain to our peers the rules of living with an HIV status. I’ve made a decision that when I go back home I will become an active member of the peer support group established at the Regional Center Against AIDS, and I will share the knowledge I gained here with my peers.»
The fourth and fifth days of the training were conducted under the theme «I also sought help!» The last two days of the training covered topics like «Consulting HIV-positive young people through peer support and peer education», «Rights of the young in practice», «Developing an effective dialogue», «Methods of attracting the youth to mutual assistance groups after opening an HIV-positive status». During these sessions the participants not only gained knowledge on HIV and AIDS, but also learned useful information, including on issues such as how to interact with others, correct one’s diet, adhere to the rules of hygiene, search reliable information about your health and HIV/AIDS, and exercising.
The sessions held for the second group of participants - the mothers or guardians - were conducted by professionals experienced with the emotional and psychological needs of the participants.
«I’m very grateful for being invited to the training,» says Salima (44 years old).
«I have two children. My eldest son suffers from diabetes.My daughter Nafisa, who was born in 2002, got sick with an acute respiratory disease in 2005. She was hospitalized. Subsequent medical examinations revealed that she was HIV-positive. The whole world turned dark for me. Together with my husband, we have tried our best to support our children and provide them with treatment. Although we were hospitalized several times because of my daughter’s disease, I didn’t have enough information about HIV and AIDS. I knew nothing about how to take care of my daughter, how to protect her from external negative factors. I only knew that I had to give her the medicine, prescribed by our doctors, on a regular basis.
«When we were invited to attend this training in Tashkent, I first didn’t want to come because I was tired of the negative attitude of people towards my daughter, especially from her peers. The training, which lasted only five days, has totally changed my attitude towards life. Besides the information I’ve got about HIV, I also learnt how one has to live with HIV, how to take care of my daughter, and that my child also has rights and responsibilities like any other citizen. I was told these things by lawyers, psychologists, and physicians. I was provided with full answers to all questions that had been bothering me for all these years. Most importantly, I’ve learnt that we are not alone. Once more, I feel that we are always protected by our government.»
Amira is a 55 years of old woman, whom everybody calls aunt Amira, was one of the most active participants of the training. She started sharing her impressions of the training by performing a long prayer for organizers of thetraining and wiping her tears. She said:
«Every person comes to this world alone and lives a life surrounded by good and bad people. I take care of my two grandchildren all by myself. When I learnt that the 14-year-old Soniya, the eldest one, had HIV, I felt like I will have a heart attack. But I put myself together because I understood that I had to live for my grandchildren. She was hospitalized several times. In hospitals, no one would talk to each other. People would even feed their kids with their backs towards them. When doctors told us that this disease doesn’t have a cure, I felt even worse. Two years ago, things slightly changed when my grandchild started attending the self -support group for adolesents, living with HIV established by UNICEF. I noticed that every time when she comes back from the group meetings she would be in a good mood. She started becoming more active in public activities. I was glad to see all that. However, since we live in Tashkent region, I could not afford to send Soniya to the group meetings all the time. After attending this training, Iunderstood that I was wrong. Most importantly, I understood that one can live a long life even with HIV. And I learned that it is very important to provide emotional support to positive children. The dialogues we had with specialists removed all my doubts and suspicions that had been bothering me for a long time. Unfortunately, the self-support groups for adolescents, living with HIV, established by UNICEF, currently operate in Tashkent and Andijan cities only. I would like such groups, consultation units under Regional centers for fighting against AIDS to be established in each region and in each district. They would provide a great help to parents like me, showing them the right directions in which to move, and assisting them in bringing up their children to become full-fledged members of society.»