Caring and Living as Neighbours (CLAN), has launched a new campaign aimed at improving the lives of children living with epilepsy, a condition affecting thousands of families across Uganda.
The initiative, unveiled on Thursday at a press briefing held at Mulago Hospital, seeks to increase public awareness, strengthen family support systems, and improve access to treatment.
The drive comes at a time when epilepsy continues to place a heavy burden on communities.
According to global estimates, more than 50 million people live with the condition, with Africa carrying over 80 percent of the load. In Uganda alone, nearly 400,000 people are believed to have epilepsy, many of them children.
Speaking at the launch, paediatrician and child health advocate Dr Esther Kobel highlighted the scale of the challenge.
“Epilepsy is a disease that affects the brain. It is the most common disease that we see that affects the brain. Children and adults. And the World Health Organization really estimates that about 50 million people have epilepsy," Kobel said.
She noted that Uganda’s national survey found that 1.63 percent of the population live with epilepsy, a figure she described as significant.
“Meaning that in every 1,000 people who are walking around, there is at least one person who has epilepsy. And that is quite a burden for us," she said.
Dr Kobel explained that most cases among children arise from preventable causes such as complications during pregnancy and childbirth, as well as early-life infections like meningitis. However, for many patients, the exact cause remains unknown.
Despite the challenges, she emphasised that the condition is manageable.
“Almost 70 percent of people can live without having the seizures… if they got their medications, 70 percent of people would actually live seizure-free," she noted.
However, she warned that access to care remains a major concern. Many families struggle to reach hospitals, some health centres lack trained staff, and myths linking epilepsy to witchcraft continue to delay treatment.
Dr Kobel added that even where government hospitals provide medication, supplies are not always consistent.
“The government has provided some medication, but not all is available. And even when we look at what is available, sometimes it runs out of stock.”
“A family where there is a child with epilepsy is usually thrown further into poverty because they have to deal with finding medication… and the expenses in coming to the hospitals," Kobel said.
The event also featured testimonies from parents, who have children with epilepsy.
The campaign is spearheaded by Caring and Living as Neighbours (CLAN), an organisation working to improve the wellbeing of children with chronic conditions.
Dr Kobel said the organisation focuses on supporting families so that children with epilepsy can live dignified, healthy lives.
“Every child living with a chronic illness should be able to reach their maximum potential… we support them for them to be able to take care of their children well and thrive.”
The drive will include community sensitisation, caregiver training, school engagements, radio programmes, and strengthening access to antiepileptic medication. Organisers are calling on health professionals, civil society, development partners, and philanthropists to support the initiative.
Through the campaign, CLAN hopes to reduce stigma, equip families with first-aid skills, link households to medication support, and ensure children with epilepsy remain in school and receive continuous care.