Late epilepsy diagnosis, stigma spiking cases in country — health experts

A surge in epilepsy cases across Uganda has raised alarm among health experts, who say the country is facing a silent neurological crisis, one worsened by late diagnosis, stigma and uneven access to care.

A national survey conducted between 2019 and 2024 revealed that about 1.69% of Ugandans, which is over 770,000 people, are now living with epilepsy, a figure significantly higher than earlier estimates.

The Eastern region recorded the highest burden at 2.16%, followed by the Central and Western regions at 1.6%, while the Northern region posted 1.35%.

Localised studies have shown even more troubling spikes, with research in Moyo, Adjumani and Gulu districts reporting active epilepsy rates as high as 3.7%, and some communities like Awach in Gulu reaching 6.6%, making young people aged 10 to 19 among the most affected, according to the study.

Health advocates warn that these numbers reflect a worsening situation on the ground.

Addressing journalists at Mulago Hospital on December 11, 2025, Esther Kobel, the Co-Founder of Caring and Living As Neighbours (CLAN), an organisation charged with child protection, said the rising cases are deeply concerning, especially because many of the contributing factors, such as complications during pregnancy, difficulties during childbirth and early-life infections, are preventable.

“The sad reality is that the majority of people are not getting diagnosed early,” she said. “Epilepsy is not being identified in time, especially among our children, who suffer the most compared to adults.”

Kobel added that infections such as meningitis remain a major trigger yet are often missed or treated too late.

“A mother may have an infection while pregnant, or a baby may acquire an infection in the newborn period,” she said. “These are preventable issues, but when they happen and go unmanaged, they predispose children to epilepsy.”

Epilepsy is manageable

Despite the rising numbers, experts insist that epilepsy is manageable.

“Nearly 70 per cent of people with epilepsy can live seizure-free if they get the right medication,” Kobel said.

“The tragedy is that many do not reach hospitals in time, or they go to facilities where staff lack the training to recognise or manage the condition.”

Even when families seek help, many encounter stockouts of essential antiepileptic medicines in government facilities. Kobel said the inconsistency is undermining treatment.

“Government has made progress by providing some drugs, but not all are available, and even those sometimes run out of stock,” she noted.

She added, “Treatment must be continuous—there should be no break.”

Beyond the challenges in health facilities, stigma remains one of the biggest obstacles to early diagnosis, according to Kobel. Some families, she says, keep children with epilepsy hidden or attribute the condition to witchcraft, delaying treatment and worsening outcomes.

“Parents fear talking about their child’s seizures because they don’t want to be stigmatised,” Kobel said. “It harms both the child and the family.”

Lillian Nakafeero, a parent with a child affected by epilepsy, said community support is urgently needed.

“People think they can only help by giving money, but support goes beyond that,” she explained.

“We need people talking about epilepsy on radio talk shows, in churches, at community meetings. Teachers should understand it so they can support children in class. These simple things save lives.”

She added that practical assistance can transform families’ lives.

“If someone has a skill to train a parent, tailoring, hairdressing, baking, those skills help them earn and support their children,” Nakafeero said. “And yes, if someone can donate medication or find a way to buy it, that too makes a huge difference.”

Experts say reversing the current spike will require a combination of awareness, reliable medication supply, and community-driven support.

As Kobel put it, “We all have a role to play, neighbours, church leaders, teachers, radio presenters. Understanding and supporting families living with epilepsy is not just compassion; it is lifesaving.”