Living with Sickle Cell in Nigeria

-By Aisha Sambo

Do you know that Nigeria alone has nearly 150,000 children born annually with sickle-cell anaemia? The country bears 50% of the global burden of the disease. Sickle Cell Disorder (SCD) is caused by a mutation in the gene that helps in the production of haemoglobin, a substance that is responsible for the transportation of oxygen in the blood. The blood harbours various types of cells, most common of these cells are the red blood cells, they are the cells that contain the haemoglobin, a red pigment that gives the blood a characteristic red colouration. The haemoglobin of a normal red blood cell is not mutated, thus the cells appear disc-shaped, whereas, in SCD, the red blood cells are sickle-shaped due to mutation of the haemoglobin. The disease is heritable and the mutated gene can be passed on from parents to children. Knowing your genotype prior to marriage could help to curtail the menace and spread of this disorder.

There is no doubt that to successfully ameliorate this disease, there is a need for a radical approach to improved awareness. A number of outstanding Non-Governmental Organisations (NGOs) in Nigeria are breaking the cycle on sickle cell. In honour of Sickle Cell awareness day, I would like to spotlight a remarkable woman I admire so much: Samira Sanusi. She is living proof that you can still have ambitions and dreams while living with SCD.

Samira Sanusi is a sickle cell awareness advocate and writer. She is also the president of the Samira Sanusi Sickle Cell foundation, an Abuja based NGO that was founded in 2014. She has written two very interesting books. Her first book titled “S for Survivor” features a memoir of her journey living with Sickle Cell, and her second book titled “I wrote this for you” is a collection of poetry, prose short essay and philosophical quotes. SCD sent Samira on a 7-year journey to fighting for her health and life, she’s had over 28 surges and is now cured of Sickle Cell Disease. Although not an easy journey as I can only imagine, Samira meets the odds and is striving for others to be as fortunate as she was.

Through the Samira Sanusi Foundation, Samira and her team have raised funds for organisations and clinics that provide care, aid, and treatment for Sickle Cell patients. Her foundation also organises awareness programs to educate and sensitise people on the disease in Nigeria. The foundation is also committed to supporting the Nigerian government in accelerating provision for management and treatment of SCD complications. To douse the excruciatingly painful experience, families of the victims are encouraged to provide unending support to the patients. Families are the pertinent stakeholders required for ensured successful health care delivery to SCD patients.

SCD is one of the common inherited disorders in the world and three-quarters of the cases occur in Africa. In Nigeria for example, it affects two out of every hundred children born. Thanks to the Sickle Cell Foundation Nigeria and other NGOs like Samira, the country now have sickle cell centres. A group of NGOs under the aegis of The Coalition Of Sickle Cell NGOs have urged the government to implement health policies that would make provision for newborn testing and improve the lives of sufferers through access to adequate care. The coalition comprises of 13 NGOs they include the Sickle Cell Foundation Nigeria, Sickle Cell Advocacy and Management Initiative (SAMI), CrimsonBow Sickle Cell Initiative, Genotype Foundation, Tony May Foundation, Sickle Cell Aid Foundation (SCAF), Couple and Kids Initiative, Noah’s Ark Foundation, Soulage Foundation, Nirvana Initiative among others. Even cooperate organisations are demonstrating a level of commitment to the promotion and support of SCD patients. For example Banks such as Keystone Bank and Fidelity Bank has partnered with Slum2School Africa and Coalition of Sickle Cell NGOs to create awareness about SCD in Lagos. Traditional rulers will also have a major role to play in creating awareness, because most people living in rural areas may not be well informed about SCD. For instance, the Emir of Gwandu and Chairman, Kebbi State Council of Chiefs did launch a sickle cell awareness and sensitisation campaign in the state.

World Sickle Cell Day June 19th, was established by the United Nations General Assembly in 2008 in order to increase the awareness about the sickle cell disease and its cure among the common public. Nigeria joined the rest of the world to commemorate the 2019 World Sickle Cell Day as designated by the United Nations to draw attention and create more awareness on the problems posed by SCD.

So far Nigerians have been doing a tremendous job in driving advocacy and educating the public on the disease, nevertheless, more work needs to be done to cut down the prevalence of the disorder. If you don’t know your genotype now is the time, visit accredited health centres to determine your genotype. It is also good to know that normal haemoglobin displays an AA genotype, whereas a semi-normal one carries AS genotype. Abnormal haemoglobin has an SS genotype. The risk of amplifying the disease prevalence is higher in couples that are both AS, SS or any mixture of the two (AS & SS). It is safe when any of the couples is AA, thus the risk of giving birth to a child with SCD is near zero.

*This article is dedicated to all SCD warriors, especially to my late friend, Fatima-Yasmin Abdulkadir Kure who passed away on the 2nd of May 2019. She was an SCD fighter who had a loving and supporting family, she was a remarkable woman, gifted in the kitchen with her skills and the words of God. I miss you and may your soul rest in peace.