Let us talk about experience. Its a cliche that experience is important. That’s true for almost everything in life. However, when it comes to care-giving for a health condition as unique and challenging as epilepsy, experience becomes truly essential! Because while the knowledge gained through the study or instruction in neurology is important, the experience of having dealt with seizures on a personal basis brings that knowledge to life, turning theory into practice and tough lessons into wisdom.
I am called Isaac Salira and am the founder of this organization. I have had idiopathic epilepsy for more than 15 years. I have lived through the necessary changes and processes that a Person With Epilepsy (PWE) has to go through whether they like it or not. The initial confusion, denial and then depression. The constant and sudden hospital trips from unpredictable seizures and falls. The stigma, misinformation, isolation and then seclusion. The trial of different anti seizure drugs. The required lifestyle and personality changes. And then finally, being absolutely SEIZURE FREE for 5 years and counting!
So this issue is very important to me. The challenge of epilepsy is a LIVED EXPERIENCE. Only a PWE or someone who has cared for a PWE can fully appreciate this. This is why when I decided to set up an organization to help people dealing with epilepsy, I looked for those with a personal connection to the disorder. The core team here at Seizure Support is made up of epilepsy SURVIVORS. Our team is made up of actual PWE or people who have cared for PWE on a daily basis. Our goal is to share the power of our TESTIMONY!
At Seizure Support, our vision is simple yet deeply transformative: to help every Person With Epilepsy (PWE) we can reach live a seizure-free, stable, and normal life. While this may sound idealistic to some, we know it is entirely achievable. With consistent access to the right anti-seizure drugs and strict lifestyle management, many PWEs can regain control and avoid seizures entirely
In places like Uganda, the gap between what’s possible and what’s real is vast. The majority of people living with epilepsy do not have access to even the most basic treatment. They are forgotten, isolated, and vulnerable—often facing stigma, poverty, and discrimination alongside the terrifying unpredictability of untreated seizures. This means they live on edge, unprotected from the next seizure, without medical guidance or social support. Many suffer in silence, misunderstood by their families, abandoned by employers, or hidden away due to cultural stigma.
We believe epilepsy is not a curse. It is not a spiritual failure or a death sentence. It is a treatable medical condition—and when care is available, hope returns, healing begins, and life is restored. Our vision is not charity—it’s justice. And we are committed to fighting for every life that epilepsy tries to steal.
Together, we will build a world where epilepsy is no longer a sentence of silence, but a story of strength.
Epilepsy Management Guide
The Epilepsy Management Guide equips Persons With Epilepsy, families, and caregivers with practical strategies for seizure control, medication use, and lifestyle adjustments. By bridging medical insight with lived experience, the guide empowers readers to make informed daily choices that support long-term seizure stability and independence. It forms the knowledge foundation of Seizure Support’s lean, impactful mission.
Seizure Support Patient Portal
The Patient Portal enables Persons With Epilepsy to create detailed profiles, record seizure history, and securely share vital health information with our team. Members receive tailored guidance, strengthen collective data, and support research-driven insights. This platform fosters personalized care, enhances community understanding, and positions Seizure Support as a trusted hub for epilepsy management in Uganda and globally.
Global Epilepsy Forum
The Global Epilepsy Forum provides a safe online space where Persons With Epilepsy and caregivers connect across borders. By encouraging open discussions, sharing lived experiences, and offering mutual encouragement, the forum reduces stigma and isolation. It builds solidarity, strengthens resilience, and empowers individuals to navigate epilepsy with hope, knowledge, and a true sense of belonging.
Sensitization & Awareness
Our sensitization efforts reach schools, communities, and health workers with accurate information on epilepsy. Through workshops, seminars, and outreach campaigns, we challenge stigma, replace myths with facts, and promote empathy. This proactive approach builds inclusive communities, empowers first responders, and fosters a more compassionate society where Persons With Epilepsy can live openly, safely, and with dignity.
Do you have experience living with epilepsy or know someone who has? Are you a medical professional with knowledge, expertise or experience treating epilepsy? Are you a caregiver of a PWE with experience dealing with seizures? Are you a policy maker or do you have the ability to affect health policy? Or you are simply willing to spare your time or effort helping persons with epilepsy? Join our organization as a volunteer!