July 7, 2011
Teopista. (Photo: EGPAF)
My name is Teopista and I am 13 years old. I come from a family of five children from two mothers. After my mother died when I was very young, my father remarried. My stepmother was very nice to all of us, but she also died. I was eight years old at the time, so my father took me to the village to live with my Jjajas (grandparents). After about three months, my siblings and I were told that our father had AIDS and was very sick. Before that, I didn’t know what AIDS was. I went to visit my father and a week later he died. Soon after his death, my younger brother John also passed away.
Like my brother, father, and mother, I soon began to get sick. People suspected that I also had AIDS.
One day as I walked home from school, I passed out and woke up in the hospital. The doctors ran several tests and my Jjaja was called out of the room to receive the results. When she walked back into the room, she looked very worried. No one, including Jjaja, told me about what was said.
After I was discharged from the hospital, I began receiving several pills that I had to swallow twice a day, every day. Although no one discussed my treatment, I now know that what I was taking at the time were antiretroviral drugs – medicines to treat those living with HIV. I was nine years old.
Whenever people would ask my Jjaja about my health, she would simply tell them that I had a fever and was unwell. However, soon after my hospital visit, I developed shingles. People would run away from me, and I had to cover my head with a scarf every time I left the house. This went on for weeks. Some people even made comments like, ”You are still alive? We thought you had died!”
When I turned 10 years old, Jjaja told me that I was HIV-positive. I was so worried. I kept thinking of my late parents. I cried all the time, so Jjaja took me for counseling, which helped me feel a bit better. It was during the counseling sessions that I was introduced to a support group called the Ariel Club, which was established by the Elizabeth Glaser Pediatric AIDS Foundation. Ariel Club was created in honor of Ariel Glaser, Elizabeth Glaser’s daughter, who died of AIDS-related illness as a child.
At first, I thought I would be the only one in the group living with HIV, but I was introduced to other HIV-positive children and this made me strong. We were counseled and given everything from school fees, to money for transportation, to pick up our medicine – even the shoes I am wearing right now. We also played lots of sports and games. It was so nice!
After learning my status, I became more responsible about taking my medicine. I soon started feeling healthy and more alive each day. The people who had seen my skin condition were amazed by my total recovery and started being nice to me. It felt so good to be accepted.
The Ariel Club gave me confidence to talk openly about my status. I now talk to my peers about HIV/AIDS and they actually take my advice. Today, I am happy because I look and feel good.
The Elizabeth Glaser Pediatric AIDS Foundation no longer provides services in Mukono district. As of May 2010, the Foundation initiated a new project, Strengthening Tuberculosis and HIV/AIDS Response in the South Western Region of Uganda (STAR-SW). STAR-SW is a comprehensive, district-based HIV/AIDS and TB program. The project now supports services in 13 districts in southwestern Uganda.
Children from Mukono district, like Teopista, continue to receive services through the Uganda Ministry of Health.