The trauma of HIV-positive kids
Jan 27, 2007
At 15 years, HIV-positive Faith fervently prays to God for a cure against the virus afflicting the world.
By Lillian Nalumansi
At 15 years, HIV-positive Faith fervently prays to God for a cure against the virus afflicting the world.
Born with HIV, Faith says a cure would make her life of taking 16 tablets of Antiretrovirals (ARVs) every day easier.
“Sometimes I do not feel like taking them (the tablets), but I have nothing to do. I know I need them to live so I take them no matter what,†Faith reveals.
“Every day at 6:30am, I take eight tablets and another eight at 6:30pm,†she says.
Until a cure is found, Faith says taking her drugs is a must and that forgetting to take them is one of her fears.
Another 12-year-old boy living with HIV says he also prays to God for a cure because it would enable him live a life free of medication, which he takes in hiding because of his guardian’s negative attitude.
“My parents died and I live with my aunt in Kabale. She always tells me that my mother died of AIDS and I am also about to die,†he says sadly.
“She threw away my medication and does not want me to take it. I however, find ways of going to the hospital for my medication and take it from the toilet,†he says.
The two were among the 31 children living with HIV sharing their experiences at a four-day camp at the Youth With a Mission Centre in Wairaka, Jinja recently.
The camp was organised exclusively for children living with HIV/AIDS by the Elizabeth Glaser Paediatric AIDS Foundation (EGPAF). It is named after the daughter of its founder, Ariel Glaser, who died of AIDS in the United States. The Ariel Camp was in honour of December 1, the International World AIDS Day. The theme of the day is “Unite for Children, Unite Against AIDSâ€.
The country director of the foundation, William Salmond, said the camp was an opportunity for the children drawn from different districts in Uganda to meet and share their experiences, make new friends, enjoy themselves and develop coping strategies as they gained new knowledge about HIV/AIDS.
Besides sharing their experiences, the children got to enjoy Jinja’s eye-catching sites like Bujagali Falls and the source of the Nile.
Salmond explained that taking ARVs is harder for children because they take them in larger quantities than adults. He said since there are no ARVs exclusively for children, children have to take adult ARVs administered in formulations suited for them.
The organisation’s psychosocial support programme officer, Rita Larok, said children below 10 years are given syrups. Once they grow older, they switch to tablets.
“We are hoping that pharmaceutical companies come up with small-size drugs like piriton for children,†she said.
Salmond and Larok’s explanations were echoed by a mother with three HIV-positive children. She said taking many drugs makes adherence for children harder.
“Most of these drugs are bitter. Children need treatment supporters to help them adhere to their dosages,†the HIV-positive mother said.
Larok said it is even harder administering medication for children below 10 years.
“Younger children are given syrups and not tablets. These syrups have to be given according to measurements labelled on the bottle. The labels are marked with markers and it becomes difficult for children being looked after by their grandmothers,†Larok said.
It was also noted that the drugs give the children a very big appetite and since many come from poor families, they take them on empty stomachs.
Although the children complained about having to take the drugs daily, they attribute their improved health to them.
“I used to have constant malaria and diarrhoea, but after taking ARVs for sometime, I stopped falling sick,†Jazim, 17, said.
“I am now on ARVs and I am strong. Before, I was weak,†Namanya, 13, said.
Most of the children said they take their medication from home and not at school for fear of discrimination.
“The deputy-headmaster would keep my medication. I would take the medicine from his home, where other children do not see me,†Namanya said.
Salmond said children in rural areas face worse stigma than their counterparts in urban areas.
“Kampala has a better history of dealing with HIV. The children are more welcome in schools compared to the rural areas where myths and stigma still exist.
Thirteen-year-old Josephine says she is glad that her school treats children living with HIV well.
“When the teachers and children find out that you are HIV-positive, they treat you specially. When I fall sick, they visit me and pray for me,†she says.
Through the foundation’s Prevention of Mother-to-Child-Transmission of HIV programme, which is supported by the United States President’s Emergency Plan for AIDS Relief, the children and their mothers receive free ARVs.
At 15 years, HIV-positive Faith fervently prays to God for a cure against the virus afflicting the world.
Born with HIV, Faith says a cure would make her life of taking 16 tablets of Antiretrovirals (ARVs) every day easier.
“Sometimes I do not feel like taking them (the tablets), but I have nothing to do. I know I need them to live so I take them no matter what,†Faith reveals.
“Every day at 6:30am, I take eight tablets and another eight at 6:30pm,†she says.
Until a cure is found, Faith says taking her drugs is a must and that forgetting to take them is one of her fears.
Another 12-year-old boy living with HIV says he also prays to God for a cure because it would enable him live a life free of medication, which he takes in hiding because of his guardian’s negative attitude.
“My parents died and I live with my aunt in Kabale. She always tells me that my mother died of AIDS and I am also about to die,†he says sadly.
“She threw away my medication and does not want me to take it. I however, find ways of going to the hospital for my medication and take it from the toilet,†he says.
The two were among the 31 children living with HIV sharing their experiences at a four-day camp at the Youth With a Mission Centre in Wairaka, Jinja recently.
The camp was organised exclusively for children living with HIV/AIDS by the Elizabeth Glaser Paediatric AIDS Foundation (EGPAF). It is named after the daughter of its founder, Ariel Glaser, who died of AIDS in the United States. The Ariel Camp was in honour of December 1, the International World AIDS Day. The theme of the day is “Unite for Children, Unite Against AIDSâ€.
The country director of the foundation, William Salmond, said the camp was an opportunity for the children drawn from different districts in Uganda to meet and share their experiences, make new friends, enjoy themselves and develop coping strategies as they gained new knowledge about HIV/AIDS.
Besides sharing their experiences, the children got to enjoy Jinja’s eye-catching sites like Bujagali Falls and the source of the Nile.
Salmond explained that taking ARVs is harder for children because they take them in larger quantities than adults. He said since there are no ARVs exclusively for children, children have to take adult ARVs administered in formulations suited for them.
The organisation’s psychosocial support programme officer, Rita Larok, said children below 10 years are given syrups. Once they grow older, they switch to tablets.
“We are hoping that pharmaceutical companies come up with small-size drugs like piriton for children,†she said.
Salmond and Larok’s explanations were echoed by a mother with three HIV-positive children. She said taking many drugs makes adherence for children harder.
“Most of these drugs are bitter. Children need treatment supporters to help them adhere to their dosages,†the HIV-positive mother said.
Larok said it is even harder administering medication for children below 10 years.
“Younger children are given syrups and not tablets. These syrups have to be given according to measurements labelled on the bottle. The labels are marked with markers and it becomes difficult for children being looked after by their grandmothers,†Larok said.
It was also noted that the drugs give the children a very big appetite and since many come from poor families, they take them on empty stomachs.
Although the children complained about having to take the drugs daily, they attribute their improved health to them.
“I used to have constant malaria and diarrhoea, but after taking ARVs for sometime, I stopped falling sick,†Jazim, 17, said.
“I am now on ARVs and I am strong. Before, I was weak,†Namanya, 13, said.
Most of the children said they take their medication from home and not at school for fear of discrimination.
“The deputy-headmaster would keep my medication. I would take the medicine from his home, where other children do not see me,†Namanya said.
Salmond said children in rural areas face worse stigma than their counterparts in urban areas.
“Kampala has a better history of dealing with HIV. The children are more welcome in schools compared to the rural areas where myths and stigma still exist.
Thirteen-year-old Josephine says she is glad that her school treats children living with HIV well.
“When the teachers and children find out that you are HIV-positive, they treat you specially. When I fall sick, they visit me and pray for me,†she says.
Through the foundation’s Prevention of Mother-to-Child-Transmission of HIV programme, which is supported by the United States President’s Emergency Plan for AIDS Relief, the children and their mothers receive free ARVs.