…Stage ‘Red Umbrella Walk’ in Lagos
By Ebunoluwa Sessou
As part of efforts to commemorate World Sickle Cell Day, today, June 19, 2022, Coalition of Sickle Cell non-governmental organisations have called on all stakeholders to change the narrative against Sickle Cell Disorder, SCD.
In a-3-hour Red Umbrella Walk for Sickle Cell Disorder awareness, which took place in Oshodi and its environs, 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 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 treatment sickle cell is expensive adding that Nigerians should seek preventive measures against SCD.
National Coordinator, Coalition of Sickle Cell NGOs and CEO Crimson Bow Sickle Cell Initiative Timi Edwin, in a chat with Vanguard 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 have great policies and health care.
“Recently, we were able to get free health insurance policy for 150 people living with sickle cell.
Some members of the Coalition were in a roundtable with both the federal and state government as well as the primary health care and together we were able to discuss important issues relating to sickle cell warriors and we chatted the way forward.
“Through this roundtable, government is giving priority to sickle cell warriors. With this singular act, stigmatization will be reduced, health care is accessible and insurance is assured.
“We are also happy that today we are changing the narrative through the walk.
“We are involving religious organisations, government and every other stakeholders to make an impact in the fight against sickle cell.
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, June 19 and it falls within the rainy season adding that the charity walk is to raise awareness in order to reduce the spread of sickle cell disorder.
“The essence of the umbrella is that it is rainy season and we will open up our umbrella to walk.
“It is ‘Red Umbrella Walk’ because blood is red, sickle cell is blood disorder and the problem with sickle cell is that, it is inside the red blood cell, in a substance called hemoglobin
“We had a community outreach where we talked to men, women and children.
We started seven years ago. And today, we are taking the walk to the streets of Nigeria.
“We could not do it during COVID but we had a virtual dance’, she said.
On the awareness, Akinsete said, “There is increase in the level of awareness compared to what it was in the past. We are giving out information through the flyers to debunk all the myths around sickle cell.
“Sickle cell is not a death sentence as long as it is well managed.
“Sickle cell is not spiritual, it is inherited. It is genotic.
“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 need to travel Abroad”, she said.
Speaking on the myths about the cure for sickle cell, Akinsete noted that, it is curable with the cure called 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 the red umbrella walk, there had been educative talk shows for doctors on the management of sickle cell disease. “Apart from dermatologists who understand blood disorder, it is very difficult to get doctors who manage people with sickle cell thereby leading to complications which can result to death.
A sickle cell warrior, Habeeb Akerele, said living with sickle cell can be very challenging.
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 key when it comes to management of sickle cell.
Also, 11-year Adediji Faridat, shared her experience as a sickle cell warrior. “I missed lot of tests and examinations because of the condition.
“I am also 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 have to summon courage and I have to make my own decisions and ensure that I do good things to cope with the condition”, she said.
However, Faridat said, although they have been educated on the type of genotype to marry when they grow up to adulthood which is only AA genotype, but, said that she did not care about it.
“I believe, I will also talk to other people under me to know how to manage it”, she added.
Meanwhile, Duchess Doris Gbemiloye, CEO Genotype Foundation, said, the organisation focus on helping those living with sickle cell and availing the younger ones the ability to know their genotype.
“It is the right of the Nigerian child to know her genotype at an early age so as to make a better decision whenever necessary and it will be 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