It takes two to tango with Sickle Cell disease: experts call for couple testing

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Sickle cell disease has been with us for generations, yet very many people still don’t understand how it is passed on to children, or what can be done to prevent it. It is often shrouded in silence, myths, and stigma; even though millions of people live with it every day.

For Dr. Anne Akullo, a paediatric haematologist at Mulago Hospital and president of the Uganda Paediatrics Association, awareness is the starting point.

“In terms of clinical care and management, the first thing really is awareness, so communities know that it is a genetic condition and that it takes two parents to pass it on,” she says.

Understanding the genetics

Every child gets one gene from each parent. If both parents carry the sickle cell gene, even if they don’t show any symptoms, there’s a 25% chance - with every pregnancy - that the child will have the disease.

“People think it’s just one parent who can transmit sickle cell. That’s not true. And that’s why you hear people say, ‘we don’t have sickle cell in our family.’ But if both parents are carriers, even without any known family history, a child can still be born with the disease,” Dr. Akullo warns.

Many people live their whole lives not knowing they are carriers, because carriers don’t have symptoms. It often only becomes clear when they have a child who is diagnosed.

That’s why Dr. Akullo and others in the field strongly advocate pre-conception testing - knowing your sickle cell status before deciding to have children.

“By the time you're an adult with no symptoms, you likely don’t have the disease, but you could still be a carrier. That’s why testing before pregnancy is so important. The inheritance pattern is straightforward and can have deep consequences. Two carriers have a 25% chance of having a child with sickle cell disease with every pregnancy. You could have four children and all of them could have the disease, or none of them could have it,” she says.

She adds: “If two people with sickle cell disease have a child together, the result is more certain, all of their children will also have the disease. And if someone with sickle cell has a child with a carrier, there’s a 50% chance the child will have the disease and 50% chance of being a carrier. There’s no chance of having a completely unaffected child in that situation.”

Debunking the myths

Another major challenge is stigma. “Some people still think sickle cell is caused by bad luck, it’s contagious, or that you can catch it through hugging someone,” says Dr. Akullo. “But it’s not. It’s a genetic condition. You’re born with it.”

She also highlights another harmful belief that hydroxyurea, a key medication used to manage sickle cell, causes cancer. “That’s not true,” she says firmly. “Hydroxyurea has been studied for many years. It doesn’t cause cancer, and it helps prevent complications and pain crises when started early.”

What’s being done

The Ugandan government, through the Ministry of Health, has set up 10 regional centres of excellence that offer care for people living with sickle cell disease.

According to Daniel Roy Odur, the Executive Director of the Catherine Phil Sickle Cell Support Initiative, these centres are beginning to close some of the gaps in access and caregiver support.

“They are not only giving care, but training caregivers in home-based management. And while access to hydroxyurea remains a challenge, some centres are offering it,” Odur says.

The Catherine Phil Initiative is one of several civil society organizations working alongside government and community health workers to raise awareness, fight stigma, and provide support.

In Kayunga, a pilot project is distributing hydroxyurea and training communities with the hope that this model can be replicated countrywide.

In academic circles, the Sickle Pan-African Research Consortium (SPARCO), based at Makerere University, is equipping health workers with current knowledge through continued medical education (CMEs).

“They are helping improve clinical care and research across Uganda, building long-term capacity,” Odur adds.

Catching it early

Another game-changing step is newborn screening. Dr. Akullo stresses its importance. “We should be testing newborns just like we do for HIV or hepatitis. If we know early that a baby has sickle cell, we can start them on preventive medication by three months of age.”

Penicillin V helps protect children from bacterial infections, and folic acid supports red blood cell production. By nine months, babies can start taking hydroxyurea, which significantly reduces pain and hospital visits.

“This gives children a better quality of life from the start,” she explains. “Even if they don’t yet have symptoms, we start treatment early. That’s what makes the difference.”

This year’s global theme to mark World Sickle Cell Day on June 19, is Community Voices, Collective Action. Each year, World Sickle Cell Day brings a theme to guide the conversation.

It’s a reminder that sickle cell isn’t just a medical issue, it’s a community issue. When people speak up, patients, caregivers, healthcare workers, and when policies are shaped by real experience, real progress happens.

Community voices mean listening to the people living with the disease - their stories, their struggles, their resilience. Collective action means bringing everyone to the table - government, NGOs, researchers, families.

Together, they are pushing for better policies, better access to medication, stronger healthcare systems, and more investment in research.

A path forward

Sickle cell disease might be inherited, but silence and misinformation don’t have to be. It starts with knowing your status, spreading the right information, and breaking the stigma.

As Dr Akullo puts it: “The most important thing is that you get it from each parent. It takes two. And that is what people need to understand.”