Between Seizures and Stigma: My Struggle with Epilepsy and the Global Public Health Challenge
Part 4 of the neuroepidemiology series gets a bit personal with my story dealing with epilepsy contrasted with the global experience
Living Between Worlds
The moments before and after a seizure feel like you’re in a strange limbo. There’s a creeping sense that something is coming, an aura, or shift in awareness, followed by nothing. Then, time fractures. The next thing you know, you’re on the floor aching, exhausted, and with confused faces looking down at you. Often, they’re scared. Sometimes, they’re crying. They’re pretty much always confused. You piece a bit together from the wreckage after coming to. Shit, I was home alone cooking and burnt my hand trying to clean up. Ha, I remembered to try and clean up! Or someone explains to you in the ambulance that you seized and crashed your car into the center divider on the freeway. All you know is your mind is tired, your body is battered, and a severe fog remains with your brain trying to reboot.
The seizure itself is only part of the story. Before and after matter just as much. For some of us, an aura manifests as a type of mounting anxiety or, in my case, deja vu. Some get no aura at all. Meanwhile, the post-ictal stage can malinger for hours. This is typically characterized by confusion, memory lapses, fatigue, and on rare occasion, a bit of aggression of weird behavior. Once I came out of a seizure having punched the police lieutenant of my town in the face. I remembered nothing of the interaction.
Epilepsy also consists of the fear of the next one, the disorientation after, and adjustments to a new norm. A change from nocturnal to daytime seizures turns into not being able to drive for two years. A change in medication leads to personality changes or mood swings. This is one of its hidden complexities, this ripple effect that can alter how you see yourself and how others treat you.
The condition affects more than 50 million people around the world, but it is severely misunderstood. Despite effective treatments for most people with epilepsy, a significant portion of the population still lacks access to care, especially in low and middle income countries (LMICs).
The Global Burden of Epilepsy
Epilepsy is one of the most common neurological disorders, with the Global Burden of Disease Study estimating that it accounts for over 13 million disability-adjusted life years (DALYs) annually. Its prevalence varies significantly between high income regions and LMICs, with LMICs having a disproportionately higher share of epilepsy cases [1, 3]. Incidence rates of new cases are also two to three times higher than in high income countries, in part due to a greater burden of infectious diseases, traumatic injury, and healthcare infrastructure issues.
Other public health metrics, like mortality and disability statistics, such as years of life lost (YLLs) are a reflection of early mortality linked to uncontrolled seizures, accidents, and potential sudden unexpected death in epilepsy (SUDEP). Years lived with disability (YLDs) give us an idea of the daily limitations people face with cognitive impairments, social restrictions, and mental health challenges that often come with a chronic seizure disorder. Time-trend analyses from 1990 to 2019 a concerningg rise in epilepsy-related YLDs in low socioeconomic regions underscore a need for targeted interventions [1, 5].
These stats also translate into some substantial economic losses. Globally, epilepsy response requires billions of dollars from healthcare systems yearly in the form of hospitalization, clinical evals, and ongoing pharmacological treatment. Indirect costs like lost productivity, unemployment, and stigma-related social exclusions all magnify this economic burden [2, 7]. In higher income settings, advanced diagnostics, treatment options, and access to specialists often mitigate certain risks. Things like patchy insurance coverage make this unrealistic for many, even in more developed countries. I was lucky to be living in LA County with a great first neurologist willing to refer me to a specialist when I proved treatment resistant to many medications. Having massive research institutions in the area helped as well, with Kaiser Permanente and UCSD both running sleep studies on me and UCLA running an advanced diagnostic procedure (more on this later). I can’t even imagine the costs of all of this had I not been with a decent insurer.
From a personal perspective, these numbers and economic analyses are only part of the story. Each of these statistics points to individuals managing the unpredictable, trying to navigate stigma in communities, and dealing with medication side effects.
Risk Factors and Causes
Epilepsy is not a singular disease. The diverse etiologies make it a unique challenge to address. It’s also not a single-cause disease, with genetics, infections, head injuries, and more playing a part. In my case, the seizures started when I was 20, a bit of a rare age for epilepsy to arise since it is most commonly diagnosed in children and the elderly. One morning I went to take a shower. I woke up four days later to a doctor saying I had been put in a coma to try and determine what was causing the seizures. In my case, I came to believe it was a combination of many things, with metabolic factors being the largest. I say this with no actual proof, and solely as an anecdote, but my seizures began when I was at my heaviest and stopped when I started running six miles a day and lost about 50 pounds. When I gained weight back, the seizures came back. I’m now six years seizure free and four years off meds, just watching my weight. I will say that metabolic causes of epilepsy are less thoroughly studied in this area, but I look forward to seeing it done. Identifying the different causes in any one person is like putting together a puzzle, but in the dark and with some missing pieces.
Certain epileptic syndromes, like juvenile myoclonic epilepsy, have clearer genetic patterns to them, with others likely involving multi-gene interactions and environmental triggers [1]. Birth complications like asphyxia or neonatal stroke intersect with these genetic vulnerabilities and shape an individuals risk profile from infancy. One of the factors possibly influencing my epilepsy was low oxygen levels as a baby, having been told I turned blue choking on my car seat as an infant.
Infectious diseases like malaria, meningitis, and neurocysticercosis stand out in LMICs as major contributors to epilepsy [3]. Neurocysticercosis, caused by the larval form of a pork tapeworm (Taenia solium) is preventable through improvement in sanitation and livestock management, but is persistent in areas without adequate public health measures. Malaria-induced seizures can also pave the way for long-term epilepsy diagnoses, a major concern as the range of malaria carrying mosquitoes continues to move northward. Controlling these pathogens is a development challenge and a medical task that demands collaboration to upgrade water supplies, sanitation measures, and healthcare resources.
Traumatic brain injuries (TBI) are another source of new epilepsy cases, and account for a substantial portion of post-traumatic epilepsy [5]. Car accidents, occupational accidents, and war-related injury can result in severe head trauma that triggers seizures months or even years later. In areas with unsafe roads and poor emergency response times, the likelihood of negative downstream effects of TBI significantly increase.
Personally, my epilepsy emerged without an obvious trigger, like a concussion or infection. The uncertainty was unsettling, going in for test after test, MRI scans, EEG monitoring, just searching for a root cause that never surfaced. This slippery nature made the diagnosis extremely frustrating.
The Epilepsy Treatment Gap
One critical challenge facing the epilepsy community is the treatment gap, a difference between those who need and who receives effective care. By some estimates, up to 75% of people with epilepsy in lower income regions remain untreated or with inadequate treatment response [2, 4]. While medication availability has greatly improved over the years, it is simply not enough in many parts of the world.
Anti-seizure medications (ASMs) may be cheap or free in some high income countries, thanks to insurance or government subsidization. Elsewhere, they can be a prohibitive cost, forcing individuals to decide what to forgo in favor of their medication. Even affordable medications are not enough though, with travel costs to distant clinics, missed work days for followups, and ongoing side effect burden add to the layers of strain [7].
Stigma is another obstacle to seeking care for epilepsy. Cultural myths portraying epilepsy as a contagious disease, the result of witchcraft or demonic possession, or as evidence of moral failing still exist in many regions [6]. This, and the thought of it leading to mental disability, lead to ostracization, being kept from marriages, or denial of employment due to misconceptions about their capabilities.
The Shortage of Specialists
Neurologists, in particular epileptologists, are in short supply in many areas. One specialist in an underdeveloped region might serve a population of several hundred thousand people (see the extreme example of Tom Catena, the only surgeon to over 750,000 people in Nuba, Sudan.). Diagnostic tools like EEG and MRI machines may be few and far between, existing only in wealthier urban centers. My access to a treatment-resistant epilepsy specialist was crucial, as she referred me to UCLA for what is called a Wada test. The test uses barbiturate, directly injected into one hemisphere of the brain at a time, to determine the likely area seizures arise from. My first obvious symptom that a seizure was coming would be a lack of ability to speak. This occurred when they shut off the left side of the brain, narrowing down the area my seizures arose in to an area of the left frontal lobe called Broca’s area, one of the language dominant brain regions. In regions lacking this expertise or equipment, people are left undiagnosed or improperly treated.
Public Health Efforts and Policy Responses
No single entity can tackle the problem of epilepsy solo. Effective response will require alliances among intergovernmental agencies, global health organizations, NGOs, and local community investment. Recent years have seen some encouraging progress in the form of policy and innovative programs.
WHO’s Intersectoral Global Action Plan (IGAP)
The most notable development in my eyes is the WHO IGAP on Epilepsy and Other Neurological Disorders (2022-2031). IGAP proposes a broad framework to integrate epilepsy care into national health agendas, with a focus on early diagnosis, improved medication access, better training for primary care workers who deal with seizures and their after effects, and the reduction of social stigma [2, 3]. Treating epilepsy as a public health priority as opposed to a niche concern aims to ensure the pooling of resources, standardization of care protocols, and measuring outcomes in a more coordinated manner making global studies of the disease more accurate in the process.
Specific National Programs Reducing Treatment Gaps
We have seen recent success stories in countries like Colombia and India that offer a blueprint for targeted interventions to narrow the epilepsy treatment gap [5]. In Colombia community health worker programs incorporating epilepsy education, screening, and medication distributions have proven to be cost effective and logistically feasible interventions. India’s approach includes medication subsidies, public awareness campaigns, and, crucially, consistent follow up care at primary healthcare centers.
Sustainable progress in epilepsy will require stable funding streams dedicated to researching the disorder and funding intervention programs. Currently, epilepsy research often competes with other high-profile neurological conditions for limited funds (that may be more limited in the future). Advocacy efforts by patient groups and professional orgs have begun to highlight the social and economic gains that come with addressing epilepsy, but more support is crucial. Collaborative networks that unite clinicians, researchers, policymakers, and local communities can help to align resources and accelerate breakthroughs in the areas of drug development, diagnostic technology, or psychological support networks.
Beyond the Seizures
Public health strategies and scientific research are laying the foundation for progress and the human element of epilepsy remains at the forefront of this. Neurologists aren’t just trying to control convulsions, they’re also helping us deal with stigma, maintain our mental health, and the emotional toll patients and their support networks endure.
For me, it felt like I was a burden on those around me. My family was still taking care of me as an adult. I knew my friends worried that they wouldn’t know what to do if I had a seizure around them. But this isn’t a static, unchanging disease and neither are the emotions that it brings. The support my friends and family gave me was truly transformative. Epilepsy is a lonely disease, and they made me less lonely. It makes you want to isolate at times, but they made me comfortable so I did that less and less over time. It’s no wonder studies on quality of life among epilepsy patients document similar threads of anxiety, depression, mood swings diminished self-esteem, high unemployment rates, and limited social networks [5, 6].
A Call to Action
As a global community, we have the knowledge, resources, and the will to ensure epilepsy is no longer an afterthought, but a central consideration in neurological health outcomes, taking its rightful place alongside other brutally disabling diseases.
I’d like to say my story ended on a high note. After four years of rotating through medication cocktails and doing sleep studies, I’m seizure free for six and a half years. The reason I won’t say it has ended on a high note is that I don’t know if it’s truly over. My seizures could come back at any time, and I am at an increased risk for them in old age. And while epilepsy has shaped my memory and tested me mentally in more ways than I could ever recount, I won’t let it dictate my future, even were the seizures to return. I’ve been down that road and know how to handle it. For now though, I’m happy, and that’s what matters.
References
1. The Global Burden & Epidemiology of Epilepsy: A Systematic Review (1990–2016). https://www.cns.org/Assets/5eeb95bd-a950-4e73-9681-9e7618a99088/637056130244170000/22787-pdf
2. Global disparities in the epilepsy treatment gap: a systematic review. https://pmc.ncbi.nlm.nih.gov/articles/PMC2855595/
3. Global, regional, and national burden of epilepsy, 1990–2021. https://www.healthdata.org/research-analysis/library/global-regional-and-national-burden-epilepsy-1990-2021
4. Global disparities in the epilepsy treatment gap: a systematic review. https://pubmed.ncbi.nlm.nih.gov/20431789/
5. Global, regional, and national time trends in the burden of epilepsy https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1418926/full
6. Treatment gaps in epilepsy - Frontiers. https://www.frontiersin.org/journals/epidemiology/articles/10.3389/fepid.2022.976039/full
7. The global cost of epilepsy: A systematic review and extrapolation. https://pubmed.ncbi.nlm.nih.gov/35195894/
8. Disparities in Epilepsy Diagnosis and Management in High-Income https://www.neurology.org/doi/10.1212/CPJ.0000000000200259