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Faith: "My greatest birthday present was my CD4 count reaching 500"

HIV-positive teens want to lead normal lives, just like their peers. Kampala, Uganda, September 2007. www.ugandaobserver.com

Faith is a member of the Ariel Children's Club, a group for HIV-positive children supported by the Elizabeth Glaser Paediatric AIDS Foundation (EGPAF). She talked to IRIN/PlusNews about the challenges of growing up with HIV.

"Before I knew about my HIV status I used to be very sick with skin rashes, on-and-off fevers, cough, and diarrhoea. In 2000, when I was nine years old, I tested and was told that I was HIV-positive. My CD4 count [which measures the strength of the immune system] at the time was only 39.

"By 10 years of age I had had seven hospital admissions for severe pneumonia; I had also had TB [tuberculosis] and meningitis. It was then that I was referred to Kampala-Mengo [Joint Clinical Research Centre] for further treatment.

"In 2001, I was started on antiretroviral (ARV) drugs. It was hard to get used to taking drugs daily; however, I was able to get back to school and study.

"Everything was okay until I went to boarding school [two years later]. There was a lot of stigma and discrimination, especially by the matron and some children, who made life impossible for me.

"Children ask questions: they ask about the skin rash, why I go to hospital. You sometimes tell them lies, but for how long can you lie? Not forever.

"I could not adhere [to my treatment regimen] because of fear of being seen taking the drugs. Timing was also difficult [ARVs have to taken at the same time every day]. During my second term I fell very sick, as I developed treatment failure [the virus became resistant to her medication].

"The drugs I was taking changed and now there were seven or eight tablets a day; they were difficult to swallow. In 2007 I changed to Alluvia [another ARV drug]. The drugs are smaller in size and easier to take.

"I thank those who are helping children, to give us life. The children's support group [Ariel Children's Club] has helped me a lot in coping with stigma and adherence.

"Before I joined the group, apart from other people stigmatising me, I also used to have a lot of self-stigma because of what I have gone through.

"But in the club we learn many things: how to face challenges and get solutions, how to deal with stigma and discrimination at home, at school and in the community. We also have fun activities - we dance, play and laugh.

"I am also helping other children to cope with their HIV status and stigma. I use my personal experience to teach them about adherence; I emphasise the importance of taking drugs on time and according to doctor's instructions.

"On 22nd July, on top of cutting a cake, I got the greatest birthday present ever: my CD4 count was 500 for the first time."

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This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions

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