Tawo Onor-Obassi, the founder of OKares Sickle Cell Foundation, expressed concern over the continued discrimination and social exclusion faced by sickle cell patients in 2024, despite healthcare advances and awareness efforts.

The lawyer, known for her advocacy against sickle cell disease, addressed negative perceptions and societal attitudes towards the genetic disorder.

In a statement to Wakadaily, as leader of ‘Nguvu Change,’ she emphasized the significance of considering the social and mental health aspects of SCD, which significantly impact the well-being and quality of life of those affected.

The World Health Organization recognizes SCD as a prevalent genetic disease in many African countries, with Nigeria having a prevalence rate of 20% to 30% of the global burden, as per WHO data quoted by Onor-Obassi.

The health advocate highlighted findings indicating that annually, approximately 100,000 to 150,000 children are born with sickle cell disease in Nigeria.This accounts for 5% of child mortality rates under five years old and 20% of neonatal mortality in the country.

She emphasized that misconceptions and myths about SCD, influenced by religious and cultural beliefs, exacerbate the social challenges faced by individuals with the condition. The advocate also stated that the stigma associated with SCD presents in various forms, ranging from exclusion in educational settings to discrimination in healthcare environments.

Furthermore, the lawyer expressed concern that children living with SCD often experience bullying and social isolation, resulting in diminished self-esteem and withdrawal from social interactions.

“SCD disrupts daily life, breeds isolation and inspires fear. It doesn’t help either that in 2024, there remain several myths and misconceptions about SCD. The belief that SCD is contagious, that individuals with SCD don’t live past a certain age and are responsible for their health problems, which is largely sponsored by our religious and/or cultural belief systems and our ignorance is a social problem for individuals living with SCD.

“Nigerian society has a general negative perception and disposition about this disorder, and this usually results in discrimination and social exclusion. This stigma can prevent individuals from seeking the support they need, whether from friends, colleagues, or even healthcare professionals.

“Children with SCD are bullied and excluded at school, resulting in low self-esteem and social withdrawal. They experience issues like being teased for the discolouration of their eyes (jaundice), or being excluded from school trips, sporting and social events.

“Teenagers and young adults may struggle to build and sustain relationships on the grounds of their health and a fear of being viewed as weak or unreliable. The necessity for frequent medical treatment can also cause financial challenges, putting further burden on families and limiting social prospects.

“Even at our healthcare facilities during emergencies, persons living with SCD still face stigmatisation from healthcare providers believing them to be drug seeking,” she lamented.

Onor-Obassi advocated for enhanced support systems and awareness campaigns to provide comprehensive care for individuals with sickle cell disease. She emphasized the need for regular mental health check-ups to be integrated into standard care protocols, acknowledging the importance of addressing the psychological aspects of the condition.

Additionally, she stressed the value of assembling multidisciplinary teams consisting of hematologists, mental health professionals, psychologists, and psychiatrists to provide holistic support and care.

She further said, “SCD can be managed medically with prescribed routine medicines, regular hospital checks, and maintaining hydration. But it’s essential to also address the psychological and mental health aspects of the condition.

“Training healthcare professionals to understand the psychosocial aspects of SCD will improve the patient-provider relationship.

“Additionally, advocacy initiatives, including national campaigns and educational programs, are crucial for dispelling misconceptions about SCD and reducing stigma.”

The health advocate urged for informed policy-making and sufficient funding to support research, treatment, and support programs for individuals affected by Sickle Cell Disease (SCD), aiming to address the community’s specific needs and improve their overall well-being.