On World Sickle Cell Day, a visit to Ward 16 reveals the daily reality of children and adolescents battling pain, long queues and shortages, while also finding care, resilience and moments of hope at Mulago National Referral Hospital.
Children limp through crowded corridors. Others chase one another through the hallways as though they are anywhere but a hospital. Beneath a tent outside Ward 16 at Mulago National Referral Hospital, dozens of families wait their turn for treatment, relief and reassurance.
On World Sickle Cell Day, observed annually on June 19, I spent a day inside one of Uganda’s busiest sickle cell clinics, where pain, resilience and hope coexist every day.
Ward 16, also known as Ward 16A or Jelliffe Ward, is Mulago’s Paediatric Haematology Unit. It primarily admits and treats children with sickle cell disease and severe anaemia. Located near the left entrance before the Uganda Cancer Institute (UCI), it serves hundreds of patients each week.
By mid-morning, the clinic is already full. Children wait with their guardians under a tent, in corridors and outside consultation rooms. Some have yellowing eyes, a common sign of sickle cell disease, while others appear perfectly healthy.
Most caregivers are women, many of them grandmothers. Some cradle sleeping children on their laps, others clutch patient files worn from years of clinic visits. Their faces reflect exhaustion, resilience and the familiarity of a condition that demands lifelong care.
A mother’s journey
Among them is a mother who identifies herself only as Nalongo. She recalls a distressing morning when her five-year-old son experienced a painful episode and could not walk.
‘I carried him on my back while searching for a boda boda. People told me I was spoiling him because he was crying,’ she recounts.
When she finally found a rider and requested transport to Mulago Hospital, she still faced scepticism.
‘Are you so broke that you cannot go to a nearby clinic? If he is really sick, you will be stuck waiting in a long queue at Mulago,’ the rider said.
Nalongo says she has become used to such reactions but remains committed to bringing her son to Ward 16, where staff understand his condition best.
Patients who never leave
Although Ward 16 is designated for children, many adolescents and adults continue to return for care. Robinah Asaba, the ward in-charge, explains that many older patients prefer to stay with the doctors who first treated them.
‘We have treated them since childhood, so they feel we understand them better,’ she says. ‘They are supposed to go to the adult clinic at New Mulago on the fourth floor every Thursday, but they find it easier to come here since we are open Monday to Friday.’
According to Asaba, adults with routine needs are referred to the haematology ward, while those in painful crises are often managed in Ward 16.
One adolescent patient says the attachment runs deeper than convenience.
‘If you have a painful crisis, you will not get better until you are treated here. We have records of our medical history, but even if you take them elsewhere, the doctors there may not provide the same level of care.’
A clinic under pressure
Asaba says the clinic sees between 150 and 200 sickle cell patients daily, Monday to Friday.
On weekends, public holidays and after 5pm, cases are handled at the Acute Care Unit for children, while adolescents and adults are managed as medical emergencies.
‘We are understaffed, yet the number of patients keeps increasing,’ she says.
Despite the pressure, Ward 16 remains a lifeline for families from across Uganda.
Understanding treatment
Once a diagnosis is made, treatment begins immediately. Children receive monthly Fansidar to prevent malaria, since even mild infections can trigger severe crises. They also take daily folic acid to support red blood cell production.
Children under five receive penicillin V to protect against bacterial infections such as pneumonia.
‘Pen V is usually taken until five years, when the immune system is stronger,’ Asaba explains.
One of the most important advances in care is hydroxyurea. It improves red blood cell flexibility, reduces painful episodes and lowers the risk of complications such as stroke.
Awareness has also improved outcomes. Patients now understand the importance of avoiding stress, staying warm and rejecting myths about early death.
‘What is more important is screening,’ Asaba adds. ‘It should be required before marriage, so we reduce the number of children born with the disease.’
Uganda records about 2,000 babies born with sickle cell disease annually, with an estimated seven million people living with the disease or trait.
The debate around prevention
For many adolescents, lived experience shapes strong opinions on prevention.
One teenager, who requests anonymity, speaks emotionally:
‘Some parents should be more careful. Why keep having children when you can see the suffering of those already born?’
He adds: ‘In this era, people should not be giving birth to children with sickle cell disease when screening is available.
If you are a carrier, you should only have children with someone who is not.’
When essential medicine runs out
Despite its effectiveness, hydroxyurea is sometimes unavailable, forcing families to buy it.
‘Sometimes patients do not get it because numbers are high, so they buy it, which increases the cost of care,’ Asaba says.
Margaret Namanda, who cares for her eight-year-old granddaughter, has seen its impact firsthand.
Before treatment, the child had frequent crises and repeated admissions. The situation worsened when her mother struggled to accept the diagnosis.
‘When hydroxyurea was first prescribed, it was out of stock, and each tablet cost Shs1,500. I could not afford Shs45,000 on top of hospital bills, so I did not buy it at first. Later we got free capsules, and the pain reduced,’ she says.
Stigma and abandonment
Beyond physical pain, many patients face stigma, neglect and abandonment. Asaba says the impact is heartbreaking.
‘Some come without food or money for pain medicine. Some are abandoned here. Others are resorting to petty theft to survive,’ she says.
One case is difficult to ignore.
Near a bench sits a teenage boy, about 16, crying out for help to raise Shs60,000 for pain medication. He has bruises on his head, bandages and a cannula in his arm. Passers-by stop to listen and contribute what they can.
A nearby vendor later says the boy has both sickle cell disease and cancer and is also linked to alleged theft within the hospital. Asaba describes him as one of many abandoned cases struggling to survive.
Living with sickle cell disease
Among the patients is Timothy Wangi, an adolescent linked to the Sickle Cell Support Network. Of five children in his family, two have the disease and one is a carrier.
As a child, he was frequently ill and hospitalised before being referred to Mulago.
‘When I get a crisis, the pain is so bad I cannot walk. Painkillers from other clinics wear off, but I only get better after coming here,’ he says.
He explains that crises often begin gradually before intensifying.
‘If the pain increases despite painkillers at school, it may mean an infection, and it must be treated.’
To avoid stigma, he discloses his condition only to close friends and the school nurse.
‘I dread review days because of the queues, but I never miss them.’
As the clinic day ends, the waiting area remains full. New patients arrive while others prepare for long journeys home. Some leave relieved after treatment; others carry the uncertainty of chronic illness.
Yet amid long queues, medicine shortages and chronic pain, Ward 16 remains more than a hospital ward. For hundreds of families, it is a place of continuity and care, where suffering meets expertise and where, even in the hardest moments, hope is not lost.
A grandmother’s hope
Another grandmother recalls first noticing symptoms when her grandson was three months old. He cried constantly and had swollen joints. A diagnosis at Rubaga Hospital confirmed sickle cell disease.
‘The bills were too high, so we came to Mulago where treatment is free,’ she says.
When hydroxyurea was introduced at age seven, the change was significant.
‘He now takes two capsules from Monday to Saturday and one on Sunday,’ she says.
‘We can go an entire school term without a crisis. He drinks water and manages his medicine well, even though he is a picky eater.’
Fast Facts on Sickle Cell in Uganda
Sickle cell disease is among the most common inherited blood disorders in Uganda.
It is passed from parents to children through genes.
Painful ‘crises’ occur when sickled cells block blood flow in the body.
Early diagnosis and consistent care can reduce complications and hospital admissions.
Hydroxyurea is one of the key medicines used to reduce the frequency of painful episodes.
Many patients still face delays in diagnosis and interrupted access to treatment.