The founder of OKares Sickle Cell Foundation, Tawo Onor-Obassi has lamented that sickle cell patients still face discrimination and social exclusion in 2024, despite advancements in healthcare and growing awareness campaigns. The lawyer, renowned for her efforts in the fight against sickle cell disease, highlighted several negative perceptions and societal dispositions towards the genetic disorder.
The ‘Nguvu Change’ leader in a statement noted that the social and mental health aspects of SCD are sometimes disregarded, yet they have a big influence on the overall well-being and quality of life of people with the disease. The World Health Organization described SCD as a major genetic disease that affects most countries in the African Region.
Quoting WHO data, Onor-Obassi said the prevalence rate of SCD in Nigeria is between 20 per cent to 30 per cent of the global burden The health advocate noted that a study revealed that every year in Nigeria, about 100,000 to 150,000 children are born with SCD, accounting for five per cent of mortality rates of children under the age of five and 20 per cent of neonatal mortality in the country.
She argued that myths and misconceptions about SCD, perpetuated by religious and cultural beliefs, worsen the social challenges faced by individuals living with the condition. She further said the stigma surrounding SCD manifests in various forms, from exclusionary behaviours at school to discrimination in healthcare settings.
The lawyer lamented that children with SCD often endure bullying and social exclusion, leading to low self-esteem and withdrawal from social activities. “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 stigmatization from healthcare providers believing them to be drug seeking,” she lamented.
Onor-Obassi called for comprehensive support systems and increased awareness initiatives to provide holistic care for sickle cell patients. She maintained that regular mental health examinations should be incorporated into routine care protocols for people with sickle cell. The health advocate noted the importance of establishing multidisciplinary integrated teams comprising haematologists, mental health experts, psychologists, and psychiatrists to provide comprehensive support.
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 called for informed legislation and adequate funding for research, treatment, and support program for the SCD community. “In conclusion, living with SCD impacts more than physical health; it affects mental health and social well-being, necessitating comprehensive medical, psychological, and social support to improve the quality of life and foster a more inclusive and supportive environment for individuals living with SCD,” she stated.
