Neurodevelopmental disorders, NDDs, influence the way the brain works. They range from minor cognitive problems that allow those affected to lead relatively everyday lives, to severe conditions that require lifelong treatment. The signs and symptoms commonly appear from a child's preschool years, although in some cases, they can develop in late adolescence or early adulthood.
The Brain & Mind Institute (BMI) and the Department of Paediatrics & Child Health at Aga Khan University, Nairobi are building public awareness and knowledge sharing on these disorders. Through a seed grant from the International Brain Research Organization (IBRO), they are also encouraging government policymakers to heed the growing burden of NDDs in Kenya and the East African region.
"What we want to do is make it simple for our communities to understand what the brain is, what it does, and how people become afflicted with some of the neurodevelopmental conditions," explains Prof Pauline Samia, Chair of the Department of Pediatrics and Child Health, and associate faculty at BMI. "We hope to simplify the message and educate people so that they have a better understanding of how we end up with health and disease based on data from the brain."
Two of the NDDs, autism spectrum disorder and epilepsy in children, are highly stigmatised in African societies. The awareness campaign hopes to reduce the stigma associated with these conditions.
Prof Samia believes understanding child behaviour is essential to recognise these conditions, as many children are not being treated or getting the much-needed support. This is because, in some cases, their families cannot comprehend.
"They think the child is odd and unusual. So, we're hoping that through this campaign and disseminating information widely, we'll be able to reach out to them and make them understand that their child has a condition that can be treated and not that the child is doing these things consciously to annoy people. Hence, there may be better outcomes for these children in the future," she said.
The planned engagement and outreach include a day's activity for school going children at the University Center in Nairobi on May 10, radio and TV talk shows throughout the week of May 9-14, and brochures in various languages targeting rural populations where information on NDDS is rare.
"We are focusing on Kenya as the reference point to the East African region. But, of course, we want to engage with the community in a language they understand," explained Prof Amadi Ihunwo, visiting neuroscientist at BMI. "We are not covering all of Kenya's languages just yet but we are working with seven for now. We expect stakeholders from the government, like the education ministry, to appreciate that this must include all officially recognised languages. So, hopefully, we'd like to see this scaled up even further."
Prof Samia and Prof Ihunwo are hopeful that the project will help citizens better understand how versatile the brain is, its difference in various people and the important role it plays in overall health and wellbeing.