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A health advocate and founder of OKares Sickle Cell Foundation, Tawo Onor-Obassi, expressed concern over the continued discrimination and social exclusion faced by sickle cell patients in 2024, despite advancements in healthcare and increased awareness campaigns.
The lawyer, known for her work in the fight against sickle cell disease, highlighted various negative perceptions and societal attitudes towards the genetic disorder.
In a statement to made avaialable on Monday the leader of 'Nguvu Change' emphasized that the social and mental health aspects of SCD are often overlooked, yet they significantly impact the overall well-being and quality of life of those with the disease.
The World Health Organization has identified SCD as a major genetic disease affecting many countries in the African Region.
According to WHO data, Onor-Obassi stated that the prevalence rate of SCD in Nigeria ranges from 20 to 30 percent of the global burden.
She also pointed out that a study revealed approximately 100,000 to 150,000 children are born with SCD in Nigeria every year, contributing to five percent of mortality rates for children under five and 20 percent of neonatal mortality in the country. The health advocate argued that myths and misconceptions about SCD, influenced by religious and cultural beliefs, exacerbate the social challenges faced by individuals living with the condition.
She added that the stigma associated with SCD appears in various ways, from being excluded at school to facing discrimination in healthcare settings.
The attorney expressed sorrow that children with SCD often experience bullying and social isolation, which can lead to low self-confidence and withdrawal from social interactions.
"SCD disrupts daily life, causes isolation, and instills fear. It is also not helpful that in 2024, many myths and misunderstandings about SCD still exist.
The belief that SCD is contagious, that individuals with SCD have a limited lifespan, and that they are responsible for their health issues, which is largely influenced by religious and cultural beliefs and our lack of knowledge, poses a social challenge for those living with SCD."
"Our society in Nigeria generally has a negative view and attitude towards this condition, leading to discrimination and social exclusion.
This stigma can hinder individuals from seeking the assistance they require, whether from friends, colleagues, or even healthcare professionals.
“Children who have sickle cell disease often face bullying and social exclusion at school, leading to feelings of low self-worth and withdrawal from social activities.
They are often targeted for teasing due to the discoloration of their eyes (jaundice) and are sometimes left out of school trips, sports, and social events.
“Teenagers and young adults with the condition may find it difficult to form and maintain relationships due to concerns about their health and a fear of being perceived as weak or unreliable.
The frequent need for medical treatment can also create financial challenges, placing additional strain on families and limiting social opportunities.
“Even in healthcare settings during emergencies, individuals living with sickle cell disease may encounter stigma from healthcare providers who mistakenly believe they are seeking drugs,” she expressed with concern.
Onor-Obassi emphasized the need for comprehensive support systems and increased awareness efforts to ensure holistic care for individuals with sickle cell disease.
She suggested that regular mental health assessments should be included in standard care protocols for sickle cell patients.
Onor-Obassi also stressed the importance of establishing multidisciplinary teams consisting of haematologists, mental health professionals, psychologists, and psychiatrists to provide comprehensive support.
In addition to medical management, she highlighted the significance of addressing the psychological and mental health aspects of the condition.
Onor-Obassi also emphasized the importance of training healthcare professionals to better understand the psychosocial elements of sickle cell disease in order to enhance the patient-provider relationship.
She called for advocacy initiatives, national campaigns, and educational programs to combat misconceptions and reduce stigma surrounding sickle cell disease.
Onor-Obassi urged for informed legislation and adequate funding to support research, treatment, and programs for the sickle cell disease community.
