Azima, a psychology student from Tashkent, Uzbekistan, found out she had HIV when she was only 6 years old. “I was born 2 months early and needed a blood transfusion. We don’t know how I contracted the disease,” Azima tells us.
Today, Azima is 23 years old, married, and has a healthy child. She didn’t think this was on the cards for her. Receiving the HIV diagnosis at an early age, she spent a long time believing that she would not be able to live a healthy life with a family of her own.
Looking back at her childhood, Azima says, “As a child, I was often sick. My body broke out in rashes, my nails fell off, and my hair thinned significantly. Before my diagnosis, I went through a lot of symptoms, and during a visit to a dermatologist, a professor suggested testing me for HIV.” Azima was finally tested at the Tashkent Medical Academy and received the HIV diagnosis within a day.
Diagnosis at age 6
She experienced a lot of fear and anxiety. She turned to her family to understand what was going on, particularly her grandmother, who raised her. Azima remembers, “My family was in shock because we had no prior knowledge of the disease, and no one in our family had ever dealt with anything like this. There was a lot of fear, tears, and uncertainty about my future. I remember my family kept asking ‘Will she die? Won’t she live?’ ... I didn’t understand much at the time.”
Azima began receiving care. Initially, she was treated with antiretrovirals that led to severe side–effects, but after she switched to different antiretrovirals 2 years later, her condition gradually improved.
Power of peer support
At the age of 10, Azima was invited to join a peer support group with other children living with HIV in the hospital of the Research Institute of Virology in Tashkent. At first she hesitated to join, but when she did, the group went on to become an important part of her life, particularly its leader, a psychologist by training.
Recalling their first encounter, Azima says, “She called me over and asked, ‘Do you know anything about your diagnosis?’ I replied, ‘I don’t know, I don’t understand. The information we were given at the hospital made me believe I did not have much time left to live – am I really going to die?’”
The psychologist took the time to explain to Azima that she was given incorrect information and that the medication she was taking could help her body to suppress the virus, allowing her to live a long and healthy life. Through the peer support group Azima found hope. She met other girls her age who were doing well on their antiretroviral treatment.
“It gave me hope. I realized that the medication can bring about positive changes. After I started taking it, I began to notice significant improvements in my condition. I started believing that if I continued, things would get even better,” Azima recalls. She regularly attended the group’s weekly meetings. Together with her grandmother, she also participated in a 5-day training organized by the peer support group with support from the UN. It was an eye-opening moment for both.
“We realized that life doesn’t stop with an HIV diagnosis – you can keep living, you can keep going, as long as you take your medications on time, eat healthily, and take care of yourself.”
Fighting the persistent stigma around HIV
Even though Azima felt she had found a safe space that helped her to deal with her HIV infection, she still experienced stigma when disclosing her status elsewhere.
After she publicly spoke about her HIV status at a fair and on public television as part of a wider awareness-raising campaign organized by UNICEF in 2017, Azima was asked by her teachers not to come back to school, insisting that she should study at home.
Azima was only 16 at the time. This meant that she had to be home-schooled until she graduated. She completed ninth grade and, while home-schooling, she started working in a restaurant kitchen.
Falling in love and having a family
When she was 17, Azima met the man who would become her husband. He was working at the same restaurant as a cashier. Azima feared he would not reciprocate her feelings if he knew her status, but her grandmother encouraged her to be open about it. After she finally spoke to him openly, her future husband proved that her fears were unfounded and promised to always stand by her.
They married and had a baby. Azima was well-informed about the pregnancy, including the need for a caesarean section delivery and the medications she would need to take. She recalls, “By God’s grace, I became pregnant. After the wedding, both my husband and I underwent numerous tests. Thankfully, neither my child nor my husband was diagnosed with the condition.”
Today, Azima lives with her husband and family in Tashkent. She is certain that what she has in life only became possible because she was given hope: “Instead of thinking, ‘That’s it, I’ve been diagnosed, my life is over, I won’t live long’, and letting those thoughts bring you down, it’s important to stay strong mentally. Many people struggle with this, but you must not let your spirit break.”
Advocating for more awareness
Azima continues to advocate for more awareness about HIV. “In schools, colleges, and universities, incorrect information is often shared because even educators themselves do not know enough about it. It’s crucial to provide reliable and accurate information to teachers and lecturers so that they can pass it on to their students. Even in colleges and universities, as well as during campaigns around World AIDS Day on 1 December, the messaging remains fear-driven. The banners often display alarming images.”
Azima’s dream is to change the conversation. “My biggest goal right now is to study psychology and conduct motivational training sessions for people who, like me, are living with this condition,” she says. “I want to reach those who may have lost hope in life, as well as families who, after hearing about the diagnosis, have separated their loved ones, isolating them by using separate sets of dishes and keeping them sequestered from the household. I aim to become a highly skilled professional in this field and a motivator who can inspire and guide others through their challenges.”
Putting people at the heart of the response
Azima is one of over 2.6 million people who have been diagnosed with HIV in the WHO European Region – covering 53 Member States across Europe and central Asia – since the start of the pandemic in the 1980s.
Thanks to advances in antiretroviral treatment in recent decades, HIV has become a manageable chronic health condition, enabling people living with HIV to lead long and healthy lives.
Azima’s story underlines that people need to be put at the heart of the response if governments and health authorities are to successfully tackle HIV, viral hepatitis, and sexually transmitted infections.
WHO/Europe’s regional action plans for ending AIDS and the epidemics of viral hepatitis and sexually transmitted infections for 2022–2030 emphasize the urgency of reducing stigma in the health sector and society more broadly, raising awareness of HIV, along with consistent and affordable access to treatment and care for all who need it.