Saturday, 19th June 2021: As countries all over the world observed the World Sickle Cell Day today, Nigeria is not left out as organizations, individuals and groups have been creating awareness among Nigerians about the day ahead of the celebration.
Prominent among these groups is the Sickle Cell Hope Alive Foundation, (SCHAF), that has since commenced a nationwide awareness program organised to mark the 2021 World Sickle Cell Day under the leadership of Professor Oluwatoyin Nwafor .
Earlier in the month, a statement signed by the Director of Operations, SCHAF, Mr. Abayomi B. Odetunde FMLSCN, MSc, said the theme for this year’s celebration is: “Shine the Light on Sickle Cell Disease”.
Thereafter on Thursday, June 17th 2021, SCHAF embarked on Rally and Interactive Education Talk on Sickle Cell Disease, (SCD), in Ibadan, the Oyo State capital.
The Sickle Cell Disease, (SCD) awareness rally took off from University Teaching Hospital (UCH) Main Gate to the Primary Healthcare Center, Idi- Ogun-gun in Gate via NTA road in Ibadan.
Speaking during the awareness campaign ahead of the 2021 World Sickle Cell Day scheduled for June 19th 2021, Dr Aderemi who coordinates SCHAF Community Outreaches and activities commended the government for her efforts in making provision for doctors to treat Sickle cell patients in tertiary and secondary government health institutions and comprehensive health centres.
‘SCHAF is using a preventive approach to educate the public and help those living with the Sickle cell disorder to reduce the burden of Sickle cell disease in Nigeria” he explained.
Dr Aderemi then advised Nigerians not to play with their lives and future when thinking of marriage adding that they should always check their genotype, insisting that sickle Cell Disease is real.
“My advice to people is that Sickle cell is real and the burden of that disease especially on the affected family is real. The most fearful of that is when they are sick, the cost of treatment is high, Outcome of treatment that you cannot predict is still there, some of them may die early and those that are even living long, the pain of treatment is high. By the time people are aware of this, they should know that prevention is better than cure. If you are already in it, educate your children so as not to be involved.”
Two members of SCHAF - Folashade and Olufemi, who spoke with CEOAFRICA, also urged government to do more in the area of medication for them.
Folashade , diagnosed at the age of three months who would attain the golden age of 50 by July 2022 said, “I really thank God because it is only God. The pain is much and the cost of treatment is much as well. My advice to youths today is that before they get marry, they should do their blood group and genotype and seek medical advice from certified medical practitioners.”
She commended the passion and commitment of the Trustee & Co-Chair of the Foundation, Prof. Adeyinka Falusi, for her commitment and passion in creating awareness on sickle cell disease. “She is been very good to us; she spent a lot on refreshing us, she gives out fund for ulcer treatment and other major supports,” Folashade added.
Olufemi, an administrator and an entrepreneur also thanked God and the World Health Organisation, (WHO) that recognise the Sickle Cell disorder and for creating a day for the celebration which make people to know more about it.
“As we entered June even before June 19, NGOs have been creating awareness about the sickle cell disease. Take for instance, on Tuesday, we were in one school, where teachers do not even know their genotype, how would they talk to their children and students if they do not really know their own genotype,” she queried.
“I have been living with sickle cell disease for over four decades now, treatment wise is not easy but I thank God. There are a lot of complications, living with this genes and there is the possibility of having another disease like kidney or liver issue, we are living with pains already, having another health condition makes it more problematic.
“I saw one sentence on facebook during this awareness which says “Bad marriage plus sickle cell makes it hell on earth”. Stigmatisation is everywhere, in relationships, work places and even the society; they look at us as if we would die at any moment.
“So we are clamouring, know your genotype. Make sure you are compatible, once you are sure; you are good to know before you talk of love. It is important you know your partner’s genotype first.
“In the past, I have not really seen anything that the federal government had done with our case in the sickle cell disease. SCHAF and sickle cell disease patients are using this opportunity to call on our government to rise up to the awareness and treatment of the disease, even if it is support in the area of medication, it would go a long way to assist the patients,” Olufemi concluded.
The awareness programme was intended for people at the community level towards a preventive approach of Sickle Cell Disease in Nigeria.
The rally for this year’s World Sickle Cell celebration focused on the importance of Know Your Genotype, Current updates on Sickle Cell Disease challenges, as well as the care of the people living with it These were done both in ENGLISH and YORUBA to clearly communicate with the masses all in a bid to reduce the burden of Sickle Cell Disease in Nigeria.
Sickle Cell Hope Alive Foundation is a non-governmental non-profit Organization with the passion to continue rigorous enlightenment and awareness campaign to reduce the burden of Sickle Cell in Nigeria.
The Foundation is dedicated to enhance awareness and to educate Nigerians on Sickle Cell Disease. It also wishes to bring hope, create happy memories improve the quality of life for individuals who experience life-altering situations caused by Sickle Cell Disease (SCD).
The Foundation is blessed with a multidisciplinary team of Researchers, Medical and community-oriented professionals, all working together to assist in facilitating improved care of those affected with Sickle Cell Disease in Nigeria .
SCHAF assists children, young adults and their families through several key programs. In keeping with SCHAF mission, it believes in celebrating life and encouraging those affected by Sickle Cell Disease and their families to remain hopeful.
