The Noah’s Ark Foundation For Sickle Cell, an NGO based in Lagos, Nigeria, is working to support people with sickle cell disease. In a recent interview with the Nigerian Tribune, the organisation’s founder Ms. Osasele Esangbedo discussed her personal experiences with sickle cell disease and the work the Foundation does. You can read her interview (which this article uses quotes from) in full by clicking here, and you can find the Noah’s Ark Foundation website here.
About Sickle Cell Disease (SCD)
Sickle cell disease is a group of inherited illnesses that affect red blood cells, of which sickle cell anaemia is the most severe form. It is a serious and lifelong disease that needs ongoing management and it can be life-shortening. It’s caused by a genetic change that results in red blood cells forming in an unusual shape, which can reduce their lifespan and cause them to become stuck in blood vessels. People with SCD can experience episodes of extremely severe pain, called sickle cell crises, as well as more frequent infections and anaemia.
The Noah’s Ark Foundation For Sickle Cell (NAFFSC)
According to this study, Nigeria has the highest burden of SCD worldwide, and patient care can be variable or poor. Named after Noah’s Ark, NAFFSCC is a charity organisation that aims to provide a place of refuge to people with SCD. They work to reduce the burden of the disorder on people with SCD and their families by improving education and health awareness of SCD and providing free medicines (such as anti-malarial drugs), and beverages like milk and soya bean powder. They also listen and counsel people affected by SCD. According to Ms. Esangbedo’s recent interview, the charity currently supports around sixty people with SCD, many of who are children and teenagers.
The Noah’s Ark Foundation was set up in memory of Mr. Odiase Esangbedo, Ms. Osasele Esangbedo’s older brother, who died from complications of a painful sickle cell crisis in 1993 at the age of twenty-one. It is also born out of Ms. Osasele Esangbedo’s own challenges with SCD and those of her nephew who is also living with the condition.
Ms. Osasele Esangbedo’s Experiences with SCD
In her recent interview, Ms. Osasele Esangbedo discussed how SCD has affected her life. Her first major crisis, she says, was when her older brother died of complications from SCD, and her family believed that she would also only live until she was twenty-one.
“In those days, and perhaps even now, many people believe that those with the disorder do not live beyond 21 years of age.”
SCD also affected her education, and Ms. Esangbedo missed the JAMB exams (used for applying to universities in Nigeria) several times, meaning that she wasn’t able to study Banking and Finance as she had originally hoped. Instead, she took a course in Health Science, which she says has “helped me tremendously in life.”
Despite her challenges, Ms. Esangbedo says that she feels more privileged than many others with SCD. After helping other people she met with the disease, she made the decision to start the Noah’s Ark Foundation. She says that her advice to other people living with SCD would be to “know that the disorder is not an end to life.”