Sickle cell fight in Tanzania: One mother’s journey and the experts leading the battle against a silent threat

By Mbonea Herman

Tanga. What began as the familiar story of a worried parent seeking answers for a frequently ill child soon turned into a long and demanding health battle for Stella Nyakanga.

Her daughter, Joicy Lungu, suffered repeated bouts of illness from an early age, prompting the family to seek medical attention. When Joicy reached the age of two, tests confirmed that she had sickle cell disease, a diagnosis that would dramatically alter the family's life.

“I was shocked because none of my other children had the condition,” recalls Nyakanga.

Following a referral, she was taken to Tanga Regional Referral Hospital (Bombo), where doctors explained that sickle cell disease is an inherited blood disorder that can affect any child if both parents carry the trait. It marked the beginning of a lifelong treatment journey.

The challenges became more apparent when Joicy started school. Frequent episodes of illness often forced her to miss classes, with teachers regularly contacting her mother to collect her and take her home or to hospital.

“Many times I had to take her out of school and bring her home for treatment, which greatly affected her education,” says Nyakanga.

However, her condition improved significantly after she enrolled in a specialised sickle cell clinic. With regular treatment and close monitoring, she became healthier and more able to attend school consistently.

Today, the family relies on health insurance to cover treatment costs and visits hospital every month for routine check-ups and monitoring.

“I am very grateful for the care we receive. My daughter can now play and study without the major difficulties she faced before,” says Nyakanga.

Despite these improvements, she believes public awareness of sickle cell disease remains limited. Misconceptions and misinformation continue to prevent some families from seeking appropriate medical care.

She urges parents to take children with symptoms to hospital immediately rather than relying on unproven remedies.

“This disease cannot be cured through traditional treatments. It is important to follow the guidance of healthcare professionals,” she says.

Recognising the signs early

Dr Eveline Banda, a haematology specialist at Tanga Regional Referral Hospital, says symptoms of sickle cell disease often begin to appear between three and six months after birth.

Common signs include swollen fingers and toes, recurring pain episodes, frequent infections and severe anaemia, which can become life-threatening if left untreated.

“Some children also develop yellowing of the eyes and enlargement of the spleen, conditions that require close medical supervision,” says Dr Banda.

She stresses that early diagnosis is essential to ensure timely treatment and reduce complications as children grow.

According to Dr Banda, many patients face repeated hospital admissions, causing disruptions to their education and social lives.

However, with proper treatment, adherence to medication and regular medical follow-up, many can lead largely normal lives.

“Appropriate care and close monitoring can completely transform the life of a person living with sickle cell disease,” she says.

Growing awareness in Tanga

Tanga Regional Non-Communicable Diseases Coordinator Dr Elisey Magiri says sickle cell disease remains a significant health challenge across the region.

As of April 2026, a total of 413 patients were receiving follow-up care at health facilities across Tanga Region. Muheza District and Tanga City recorded the highest number of cases.

“The increase we are seeing is not necessarily due to more cases occurring, but rather improved testing services and greater public awareness,” he explains.

Among the major challenges faced by patients are recurrent anaemia, treatment costs and interruptions to education and economic activities.

Dr Magiri also highlights stigma and persistent misconceptions within communities as barriers to effective care.

“Some patients die prematurely because of delayed treatment and limited family awareness,” he says.

To address these challenges, the government and its partners have established specialised sickle cell clinics in council hospitals and provided additional training for healthcare workers.

Essential medicines such as Hydroxyurea, alongside specialised diagnostic tests, are now available at selected health facilities.

“Public education through schools, religious leaders and the media is helping to improve understanding of the disease,” he adds.

He encourages patients to attend clinics regularly and take prescribed medication consistently. He also advises young people to undergo genetic screening before marriage to reduce the risk of passing the condition on to future generations.

“Genetic testing is a crucial step in preventing more children from being born with sickle cell disease,” he says.

Tanzania's heavy sickle cell burden

National Sickle Cell Disease Coordinator Dr Asteria Mpoto says the condition remains one of Tanzania’s most pressing public health challenges.

Approximately 14,000 children are born with sickle cell disease in Tanzania every year. Between 15 and 20 per cent of Tanzanians carry the sickle cell trait, while the disease is estimated to contribute to between five and seven per cent of deaths among children under five.

“These figures place Tanzania among the countries carrying one of the highest burdens of sickle cell disease globally,” says Dr Mpoto.

More than 105,000 patients are currently being monitored through healthcare facilities nationwide, although the total number of people living with the disease is estimated at around 250,000.

She notes that what appears to be a rise in cases largely reflects improved diagnosis and increased public awareness rather than a true increase in prevalence.

“As services expand and awareness grows, more patients are being identified at an earlier stage,” she says.

Among the key challenges are limited public awareness, stigma and gaps in healthcare services in some areas. The absence of a comprehensive national patient registry also continues to affect monitoring and planning efforts.

“Misconceptions about the disease have delayed many patients from seeking hospital care on time,” she says.

Nevertheless, the government has expanded specialised sickle cell clinics in referral and district hospitals while increasing newborn screening services across the country.

Access to vital medicines, including Hydroxyurea and Penicillin, has improved, and healthcare professionals continue to receive specialised training.

“These measures are creating new hope for people living with sickle cell disease in Tanzania,” says Dr Mpoto.

She urges families to follow professional medical advice, ensure children receive balanced nutrition and adequate hydration, and maintain regular clinic appointments.

For young people, she reiterates the importance of genetic testing before marriage to enable informed family-planning decisions.

“We must act early if we are to reduce the number of children born with sickle cell disease,” she says.

Dr Mpoto concludes that sickle cell disease can be effectively managed when detected early and when patients adhere to medical advice.

She emphasises that collaboration between communities, healthcare professionals and the government will be vital in reducing the disease’s impact across Tanzania.