36. Redefining Epilepsy: Language, Challenges, and Community Initiatives (Q&A Series)
The prevalence and stigmatization of epilepsy, particularly in low and middle-income countries, is a global health issue that requires immediate attention. Teguo Daniel Djoyum, a passionate social entrepreneur and advocate, has made it his mission to de-stigmatize epilepsy through his non-profit, the Global Organization for Health Education (GOHE), and his Fair Profit company, Purple Point Diagnostics. This episode explores Teguo's journey and his efforts to shed light on this often misunderstood condition.
The significance of 'person-first language' in the discussion of epilepsy was one of the key points of our conversation. The shift from terms like 'epileptic seizures' to 'persons living with epilepsy' has been a conscious effort to humanize the condition and reduce the stigmatizing connotations that can overshadow the individual beyond their diagnosis. By focusing on the person and not the disease, we foster a more inclusive and respectful dialogue surrounding epilepsy.
The discussion also delved into the harrowing phenomenon of sudden unexpected death in epilepsy (SUDEP). This represents unexpected deaths in individuals living with epilepsy that cannot be attributed to external causes like injury or drowning. Over 80% of these tragic deaths occur in low and middle-income countries, emphasizing the dire need for improved access to comprehensive epilepsy management. Understanding SUDEP remains a critical area for further research to prevent and mitigate these devastating occurrences.
We examined the reasons behind the higher prevalence of epilepsy in low and middle-income countries, touching on multifaceted factors such as traumatic brain injuries, central nervous system infections, and perinatal injuries. These health issues disproportionately affect poorer regions, particularly rural areas where healthcare is not easily accessible. It's critical to develop comprehensive strategies to address these risk factors and provide adequate care.
There's an urgent need for research funding and comprehensive strategies to tackle these pressing issues. Limited epilepsy studies in low and middle-income countries are often confined to specific settings, which impede effective resource planning and targeted research. Strengthening data protection measures become imperative to safeguard the privacy of participants, particularly in vulnerable settings, while advocating for more inclusive research frameworks.
The episode concluded by addressing the myths and stigmas linked to epilepsy in low and middle-income countries. Deep-rooted beliefs such as attributing epilepsy to demonic possession or considering it hereditary contribute to societal prejudices that hinder social integration and opportunities. Eradicating these myths requires concerted efforts to foster education, awareness, and inclusivity in communities with individuals living with epilepsy.
This episode served as a platform to understand epilepsy better, highlight the associated challenges, and emphasize the need for education, awareness, and inclusivity. It's a call to action for everyone to contribute towards de-stigmatizing epilepsy and making a difference in global health.
