“I missed a lot of tests and examinations due to my condition.”
“I am restricted from some sporting activities and training with my friends. It is sad but I am coping.”
“When I was told about my condition, I was shocked. But, I had to summon courage and make my own decisions to ensure that I do good things to cope with the condition.”
These were the submissions of 11-year-old Adediji Faridat, a sickle cell warrior during a Sickle Cell Awareness campaign that took place in Lagos recently.
Another sickle cell warrior, Habeeb Akerele said living with sickle cell can be very challenging. According to him: “One has to know his or her genotype in time and if diagnosed positive, you must have a sickle cell clinic for treatment. You must also belong to a sickle cell group to access more information because information is important when it comes to the management of sickle cell.
However, Faridat is yet to come to terms with the fact that she cannot afford to make the mistakes made by her parents when it comes to the issue of marriage.
Despite fighting the condition presently, she does not care about marrying either an AS or SS.
Although she revealed to WO that education is given to them on the type of genotype to marry when they grow up to adulthood, which is only AA genotype, Faridat categorically hinted that she did not care about it.
“My belief is that I was created to talk to other people on how to manage sickle cell,” she added.
In a-three-hour Red Umbrella Walk for Sickle Cell Disorder awareness, Coalition of Sickle Cell non-governmental organisations organised a walk in Oshodi and its environs, to commemorate the World Sickle Cell Day, calling on all stakeholders to change the narrative against Sickle Cell Disorder, SCD.
According to them, there is a need for the Ministry of Education to include Sickle Cell education in the Nigerian curriculum in order to bring to the consciousness of people the need to curb the rate of sickle cell disorder in the country.
The coalition, comprising Sickle Cell Foundation Nigeria, Crimson Bow Sickle Cell Initiative, Genotype Foundation, Sickle Cell Advocacy and Management Initiative, SAMI, Pearls Sickle Cell Foundation, Audrey Sickle Cell Foundation, Noah’s Ark Foundation for Sickle Cell, Sickle Cell Advocacy, TonyMay Foundation, Dabma among others, called on Nigerians to rise against increase in sickle cell disorder by knowing their genotype early to avoid raising children with sickle cell disease in the future.
With the theme: Red Umbrella Walk for Sickle Cell Disorder SCD: Changing the Narrative, the coalition in different messages urged Nigerians to seek adequate information regarding SCD in order to avoid further spread of the disorder.
According to them, managing and treating sickle cell is expensive.
National Coordinator, Coalition of Sickle Cell NGOs and CEO, Crimson Bow Sickle Cell Initiative, Timi Edwin, in a chat with WO disclosed that the coalition has been involved in lots of policies, lobbying and meeting with the government to ensure that people living with sickle cell disease have great policies and health care.
“Recently, we were able to get a free health insurance policy for 150 people living with sickle cell disease.
Some members of the coalition were in a roundtable with both the federal and state governments as well as the primary health care sector and together, we were able to discuss important issues relating to sickle cell warriors and to chart the way forward.
“Through this roundtable, the government is giving priority to sickle cell warriors. With this singular act, stigmatization will be reduced, health care is accessible and insurance is assured.
Also, National Director, Sickle Cell Foundation Nigeria, Dr. Annette Akinsete, said the reason for the Red Umbrella Walk is to commemorate World Sickle Cell Day, which falls within the rainy season.
On awareness, Akinsete said: “There is an increase compared to what it was in the past. We are giving out information through the flyers to debunk all the myths around sickle cell disease.
“Sickle cell is not a death sentence as long as it is well managed. Sickle cell is not spiritual, it is inherited. It is genetic. It can be prevented, treated, managed and cured. Sickle Cell Foundation Nigeria in conjunction with Lagos University Teaching Hospital, LUTH, has established a bone marrow transplant centre and that is a cure for sickle cell.
“This means that Nigerians can access quality bone marrow transplant without necessarily needing to travel abroad,” she said.
Speaking on the myths about the cure for sickle cell, Akinsete noted that it is curable with stem cell transplantation, adding that a sickle cell warrior can live productive life like anyone else and can contribute meaningfully to the society.
Maureen Nwachi, representing Sickle Cell Advocacy and Management Initiative, SAMI, said aside from the red umbrella walk, there had been educational talk shows for doctors on the management of sickle cell disease. “Apart from hematologists who understand blood disorders, it is very difficult to get doctors who manage people with sickle cell, thereby leading to complications which can result in death.
Meanwhile, Duchess Doris Gbemiloye, CEO, Genotype Foundation, said the organisation focuses on helping those living with sickle cell and giving the younger ones the opportunity to know their genotype.
“It is the right of the Nigerian child to know her genotype at an early age so as to make informed decision whenever necessary and it will be a preventive measure.
“In the future, having sickle cell children will be a choice to be made and not out of ignorance.
“It is important for an individual to know their genotype,” she added.
As part of efforts to commemorate World Sickle Cell Day, (June 19, 2022), Coalition of Sickle Cell non-governmental organisations have called on all stakeholders to change the narrative against Sickle Cell Disorder, SCD