The founder of the NGO, Nirvana Initiative Mrs Modupelola Babawale, has decried the continued neglect of people living with sickle cell disorder in Nigeria.
She spoke on Saturday during a medical outreach, ‘World Sickle Cell Outreach 2025’, held for 100 sickle cell patients in the Agege community of Lagos State.
Babawale said individuals living with the disorder were often overlooked and stigmatised, lacking adequate support and recognition in the society.
The outreach, with the theme ‘Seen, Heard and Supported’, marked the World Sickle Cell Day, celebrated annually on June 19.
She said the outreach aimed to centre attention on sickle cell warriors, who continue to face neglect and discrimination from both the public and policymakers.
Babawale explained that the initiative provided free medication, care packages, health consultations, check-ups, counselling, and group activities for participants.
She added the initiative is also advocating for the creation of a “warrior centre” to provide ongoing support and resources for patients.
“We have long focused on genotype testing and awareness, but it is time to shift attention to the daily realities faced by the warriors.
“Living with sickle cell myself, I have had access to quality health care and a strong support system since childhood.
“However, I recognise that many do not have these privileges. This understanding inspired me to act and make a difference in their lives,” Babawale said.
She noted that awareness must extend beyond genotype testing, emphasising continued care, support, and inclusion for people already living with the disorder.
“The warriors must not be left behind. The centre we propose will offer a judgement-free environment for care and belonging,” she said.
Babawale said certified health workers conducted malaria tests and provided mosquito nets, water bottles, and medication to participants at the event.
She stressed that the most important message was ensuring that sickle cell warriors are seen, heard, and supported by the entire community.
“They shouldn’t bear this burden alone. We need societal involvement, adequate resources, and a network of care to support them,” she added.
According to her, the outreach provides a space where patients feel free, accepted, and assured that their lives matter within society.
Outreach Coordinator and Certified Nursing Assistant, Mr Stephen Oladipupo, said the event also aimed to challenge stereotypes about sickle cell patients.
He explained the programme allowed beneficiaries to gather, share experiences, and realise they are not alone in their health journeys.
“We hope to make this regular. It’s important for warriors to feel there’s a non-judgemental community that understands and supports them,” he said.
Oladipupo added that the initiative also aimed to teach coping strategies for dealing with stigma and managing health more effectively.
One of the beneficiaries, 50-year-old Mrs Mosunmola Bamigbola, urged fellow warriors to prioritise self-care and not believe myths about dying young.
“It’s untrue that sickle cell patients must die young. With proper care, we can live long, fulfilling lives,” Bamigbola said.
She said she stays healthy by drinking plenty of water, avoiding cold, and eating fruits and vegetables regularly to manage her condition.
Diagnosed at age five, Bamigbola called on government and policymakers to subsidise medication and boost awareness campaigns to reduce the disorder’s spread.
