At just one year old, Sandra Akello lost her first anchor to life – her mother, claimed by HIV. She was too young to understand death, too young to remember a mother’s touch.
What followed, however, would shape every breath she took growing up. Akello, now 24, was an only child. After her mother’s death, she was taken in by a sickly stepmother in Lira City, while her father, a soldier, lived alone in the barracks. Grief had barely settled when tragedy struck again. Within weeks, her father died.
A few months later, her stepmother followed, also succumbing to HIV/Aids. By the time Akello could form memories, death had already hollowed out her family. The responsibility of raising her, alongside her stepsister and stepbrother, fell to their aging paternal grandmother in Ogur Village, Lira District. With the little strength she had, the grandmother did what grandmothers do best, she held the children together with faith, discipline and quiet sacrifice.
A diagnosis at 10
Life took a darker turn when Akello turned 10. She began falling sick frequently. Her grandmother, haunted by the family’s medical history, took her to Ogur Health Centre IV. ‘When I reached Primary Three in 2010, I started falling sick. They tested me and I was diagnosed with HIV. I was started on treatment,’ Akello recalls quietly. She and her elder stepbrother were enrolled at the health centre’s ART clinic. They continued school at Ogur Primary, carrying a burden far heavier than schoolbags.
But children talk. News of their HIV status spread through the village and into the school. What followed was cruelty disguised as fear. Her brother, then in Primary Seven, bore the brunt of the stigma. Classmates refused to sit with him or play with him. Lonely and exhausted, he abandoned his medication, dropped out of school and slowly faded away. ‘He died in 2013. He was co-infected with TB. He was so lean. Children feared him.
He felt so lonely and gave up on life,’ Akello says. ‘When he died, I became convinced I would also die soon. I had lost almost everyone.’ Grief overwhelmed her. A few weeks after her brother’s death, Akello dropped out of school while in Primary Six. It took the persistence of her head teacher and class teachers, who knew her academic potential to bring her back.
Brilliance amid brokenness
In 2014, as politicians prepared for the 2016 elections, one parliamentary aspirant pledged to sponsor bright students in the area. Akello saw a chance not just for education, but to lift the burden off her grandmother’s frail shoulders. She studied relentlessly. In 2013, she sat her Primary Leaving Examinations and scored Aggregate 11, passing in Division One. Only three pupils in her school achieved that grade. Akello was the only girl. True to the promise, the MP sponsored her education at King James Comprehensive Secondary School in Lira, on condition that she maintained good grades.
But boarding school introduced a new battle; privacy. Afraid of being seen taking her ARVs, Akello hid. She waited until students left the dormitory. Sometimes, she swallowed her medication in the pit-latrine. Then stigma found her again. A girl from her village joined the school and exposed her status. ‘I was now an adolescent. I cried the whole day. I lost friends. I stopped going for food and classes,’ she remembers. ‘I had submitted my name to contest for assistant head girl, but when I went on stage, students said they could not vote for someone who was going to die soon.’
Someone drew a cartoon of her on the notice board and captioned it with words she will never forget: A walking coffin. ‘I threw my ARVs in the pit-latrine,’ she says. Her performance declined. The school summoned her grandmother, warning that she was about to lose her sponsorship. Only then did Akello speak about the stigma that had crushed her spirit. Three months without medication took its toll on her. She fell gravely ill and was hospitalised for more than a month, diagnosed with tuberculosis.
Finding herself again
When her grandmother disclosed Akello’s status to the school administration, something shifted. The school matron took charge of her medication. Counselling followed at school and at home, but fear still lingered. Her true turning point came unexpectedly. When Ogur Health Centre ran out of ARVs, Akello was sent to Lira Regional Referral Hospital for a refill. ‘There were so many young people living with HIV,’ she says, her voice brightening. ‘They looked healthy. They talked freely. One girl told me she was positive too. She kept counselling me.’
For the first time, Akello saw herself reflected not in death, but in possibility. ‘I realised I could not change my status. But I could love myself, take my medication and live a normal, positive life.’ Back at school, she stopped hiding. Slowly, the whispers died down. In Senior Three, she contested for head girl and won. Her grades improved. She scored Aggregate 24 in her Uganda Certificate of Education exams.
Turning pain into purpose
In Senior Five, a friend from the referral hospital encouraged her to contest in the Miss Y+ (Young Positive) Beauty Pageant, an initiative by the Uganda Network of Young People Living with HIV/Aids aimed at fighting stigma. She needed institutional backing. Opportunity came again through Ogur Health Centre, where she was recruited and trained by the Joint Clinical Research Centre (JCRC) as a young and adolescent peer supporter. Her first salary of Shs150,000 a month was modest, but it meant independence.
In 2022, she enrolled for a Diploma in Social Work and Social Administration at Lira University, paying part of her tuition herself. Though she is yet to graduate, she has pressed on. In November last year, Akello contested for Miss Y+ once more. She emerged Miss Y+ Northern Uganda, with support from JCRC. After the contest, JCRC offered her a job as a counsellor. Today, she is attached to Parapwo Health Centre III.
This year, she enrolled for a degree in Community Psychology at Lira University, paying Shs1.6 million per semester from her own earnings. As Miss Y+, Akello now traverses schools and universities, speaking openly about HIV, self-worth, disclosure and sexual reproductive health. ‘I have met many young people who are still afraid to tell their partners, their teachers, even their head teachers,’ she says. ‘Stigma is still very real.’
The bigger picture
Dr Maureen Kwikiriza of the Uganda Aids Commission says disclosure among learners remains low. She notes that comprehensive HIV knowledge stands at 56 percent among girls and 54 percent among boys. ‘Teenage pregnancy and early sexual debut are still a challenge,’ Dr Kwikiriza says. ‘By age 15, about 13.9 percent of girls and boys will have engaged in sex.’
A 2024 pilot study in 10 districts revealed that while only 79 learners disclosed their HIV status, 199 experienced stigma and discrimination. ‘With a supportive school environment, learners can open up,’ Dr Kwikiriza advises. ‘Teachers need training, and schools must be linked to nearby health facilities. Lack of privacy and stigma stops learners from taking medication.’