NAN
A Coalition of Sickle Cell Non-Governmental Organisations (NGOs) in partnership with Fidelity Bank on Saturday in Lagos organised a 13-km walk to create awareness about Sickle Cell Disorder (SCD).
The walk, which took place in Surulere area of Lagos State, was in commemoration of the World Sickle Cell Day marked annually on June 19.
The Chairman of the coalition, Ms Toyin Adesola, said that the essence of the walk was to bring awareness to the challenges of living with sickle cell.
“We want to educate people and the society in general about SCD so that stigmatisation is stopped.
“There is so much ignorance concerning the disorder. People have a particular mindset that has been carried on for generations; for instance, the condition is perceived as `Ogbanje’.
“We also want to show ourselves as one voice, so that the government and advocacy groups can have a better understanding of what it means to live with SCD,’’ she said.
Adeola said that there was no direct policy in place to help people living with SCD in Nigeria.
She also noted that due to poor education among doctors and other medical personnel, people living with SCD die unnecessarily.
“We are coming out to create the awareness about the condition so that there are direct policies and education in hospitals and schools, because teachers also do not understand the condition.
“Also, because of stigma, parents do not speak out.
“Our goal is to create awareness and push advocacy to the National and State Houses of Assembly to appeal to them to create policies that will benefit people living with SCD,’’ she said.
Also, the Founder of one of the NGOs, Crimson Bow, Miss Timilehin Edwin, said that SCD could be well managed and people living with the condition could live fulfilled and happy life.
Edwin said, however, that people living with the condition in Nigeria were limited due to stigma at work places and inadequate care in the country’s health institutions.
“In Nigeria, there are no laws in place for people with disabilities including people living with SCD.
“People living with SCD should go to public health facilities to get adequate care and employers should not stigmatise against people with the condition.
“If these are put in place, it will go a long way to improving the lives of people with the condition and Nigerians generally,’’ she said.
The Head, Human Resources Recruitment, Fidelity Bank, Mr. Chris Nnakwe, urged corporate organisations to collaborate to improve the health sector.
“If all organisations can collaborate and have a pool of funds, that way, we will have more funds to do things that the government cannot do alone.
“One of the goals of the Sustainable Development Goals is `Do not leave anyone behind’.
“For us in Fidelity Bank, we are not giving up and we intend to make this an annual event to create awareness about sickle cell,’’ he said.
The coalition comprises 13 NGOs including the Sickle Cell Foundation of Nigeria.