Last week marks 40 years celebrating the works in the sickle cell community. Did you know Nigeria alone has nearly 150,000 children born annually with sickle-cell anaemia. The country bears 50% of the global burden. Sickle Cell Disorder (SCD) is caused by a mutation in the gene that helps make haemoglobin, the oxygen transport protein into the red blood cells. Red blood cells containing normal haemoglobin are disc shaped, but cells with this mutation are sickle-shaped. SCD is inherited and the gene can be passed on from a parent carrying it to a male or female child. Knowing your genotype matters so you are prepared if you’re thinking of getting married and having children.
There is no doubt that the matter needs even more awareness and a number 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 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 she founded in 2014. She has written two books now, 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 meet the odds and is striving for others to be as fortune as she was.
Through the Samira Sanusi Foundation, Samira and her team have raises funds for organisations and clinics that provide Sickle Cell patients with care, aid, and treatment. 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. The pain is excruciating to the patients with SCD, however support is keep and the most supportive stakeholders are the families of the affected victims.
SCD is one of the common inherited disorders in the world and three quarters of cases occur in Africa. In Nigeria, it affects two out of every hundred children born. Now there are sickle cell centres thanks to the Sickle Cell Foundation Nigeria and other NGOs like Samira. 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 promote and support SCD. For example Banks such as Keystone Bank has partnered with Slum2School Africa to create awareness about Sickle Cell Disorder (SCD) in Lagos. A Coalition of Sickle Cell NGOs also partnered with Fidelity Bank in Lagos State to organise a 13km walk to create awareness about SCD. Traditional rulers will also have a major role to play as most people living in rural areas may not be educated about SCD. For instance, the The Emir of Gwandu and Chairman, Kebbi State Council of Chiefs have launched 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 2018 World Sickle Cell Day as designated by the United Nations to draw attention and create more awareness to the problems posed by SCD.
So far Nigerians have been doing a tremendous job in driving advocacy and educating the public, if you don’t know your genotype now is the time, go to any hospital and through a simple blood test you can find out what your genotype is.
This article is dedicated to my friend, Fatima-Yasmin Abdulkadir Kure who passed away on the 2nd of May 2019. She was a SCD fighter and had the loving a supporting family, she was a remarkable woman, gifted in the kitchen with her skills and gift with the words of God. I miss you and May your soul rest in peace.
