There is a common belief in Nigeria that anybody living with sickle cell anemia, also known as SCD, dies before age 40. As a result, they are treated differently, excluded from the job market, and are not considered worth marrying.
SCD is an inherited blood disorder caused by abnormal hemoglobin – the oxygen-carrying proteins in the red blood cells. The distorted red blood cells are fragile and die sooner than regular ones, preventing oxygen from flowing properly through the body.
According to the World Health Organization, each year more than 100,000 children worldwide die from the disease before the age of five. In Nigeria, the worst-hit country, roughly 150,000 babies are born with it every year. Ignorance about the disease and a lack of funding are major challenges. But with proper prevention and treatment, it is possible to survive it.
Alhaja Laguda, age 92, is the oldest woman living with SCD in Nigeria. She said that being sick while growing up was particularly difficult. She was often too sick to attend school for more than three months a year. In the quest to find a cure for an illness people attribute to supernatural causes, Laguda was given all sorts of concoctions from local tribes. “I just took everything they gave me,” she recalled. “They would cut me on every part of my body, but I put up with it because I wanted to live.”
The disorder can cause everything from acute pain to anemia, swelling of extremities, bacterial infections and strokes – most of which can be prevented or treated when diagnosed early. Abimbola Edwin, who comes from a well-off family, recognized the disease as soon as her daughter, Timilehin, began manifesting the symptoms at four months of age. Timilehin is now 29, and has suffered much less than if her mother had not been educated about the risks.
Toyin Adesola, Founding Executive Director of the Sickle Cell Advocacy and Management Initiative (SAMI), has lived with sickle cell for 53 years. For her, early detection can make all the difference. “Currently we wait up to two years – or when the symptoms appear – to start a treatment,” she said, adding that Nigeria is behind other African countries in terms of early prenatal and newborn screenings, due to lack of proper facilities. “Prenatal screening is very expensive,” she added. “People with low incomes cannot afford it. It’s easier to do with newborns, and public hospitals are supposed to do it.”
Although Adesola’s pain has left her physically challenged, she’s determined to help others. Her foundation aims to prevent SCD’s prevalence through awareness campaigns – helping people know their genotype and get diagnosed, which is not always easy. “A lot of people mistake genotype for blood group,” she said, adding than in many cases, people are misdiagnosed. “We tell people to go to at least three places to carry out the test.”
SAMI helps parents who are often emotionally and financially overwhelmed by the disease. The organization offers free genotype testing when possible, and runs a free clinic in Lagos, where it is based. Adesola said, “The whole aim of this is to act as an intermediary between the hospital and the person with sickle cell, because we find that, due to lack of funds, a lot of people don’t do anything about the illness until they deteriorate and complications arise, and then we spend a lot of money or we lose the person.” However, she noted, funding remains a serious limitation for the foundation, too.
Adesola said that other diseases, such as cancer, tuberculosis or malaria, often receive more attention and funding from the government and organizations, who tend to neglect the issue of sickle cell. She noted that the latest statistics for the sickness in Nigeria date back to 1993.
These indicate that around 4 to 5 million people are declared to be living with the disease, a number that has surely gone up since then. Furthermore, many families keep it a secret.
Doris Gbemiloye, popularly referred to as Mama Genotype, created the Genotype Foundation. UNICEF, she said, stipulates that every child has the right to know his or her genotype. “We try to educate people at a young age because our major focus is prevention. For years we have been going to schools to run genotype tests for them free through sponsorships and donations, and the more we meet them the more they are being armed with information.” Despite the foundation’s limited means, it manages to carry out its work in cities and rural areas.
“We have a monthly meeting where we give [beneficiaries] drugs and they see a doctor on duty who talks to them about how to live with sickle cell,” said Gbemiloye. “We talk to the parents to balance their psyche because there are parents who have it in mind that their children will die anytime.” The foundation invites older survivors of the disease to talk with parents, too. They serve as living proof that knowledge and information can tip the balance for those who are born with SCD.