Health & Wellness
From stigma to science, Utah families find hope in epilepsy treatment
April Slaughter | Lehi Free Press
Seizures don’t announce themselves. They arrive uninvited and unanticipated. One moment, a five-year-old girl named Jordyn was at school, laughing with her kindergarten classmates. Next, an ambulance siren shattered the calm. That day in 2006 marked the start of Jordyn’s 18-year journey into the unpredictable world of epilepsy—a journey that would challenge her family’s hope and resilience at every turn.
Jordyn, who lives in Utah County, was plagued by seizures of various types and severity, limiting her ability to learn and experience life in a way that her sister and her peers were afforded. She was diagnosed with epilepsy at age five, later termed intractable (or drug-resistant epilepsy). As a result, no combination of medication controlled her seizures, and Jordyn suffered from medication side effects, falls, bruising, black eyes, and even a widespread second-degree scalding burn.
Jordyn’s story is unique, but thousands share her struggles.
For roughly 30,000 Utah residents, epilepsy – a neurological disorder marked by recurring seizures – is part of daily life. This figure includes people of all ages: as of 2015, an estimated 24,000 adults and 5,300 children in Utah had active epilepsy.
Epileptic seizures can take many forms. Some individuals experience focal seizures tied to one brain area – for example, flashes of light if the visual cortex is involved, or hand twitching if the motor area is affected. Others have generalized seizures that affect both sides of the brain, leading to loss of consciousness, falls, or full-body convulsions (known as tonic-clonic seizures). Still others, especially children, may have brief absence seizures that look like rapid blinking or staring spells lasting only seconds. Each person’s experience is different, but all share the challenge of unpredictable seizure episodes.
Most epilepsy patients manage seizures with daily medication, but a significant minority do not find relief. “Please keep in mind that medication doesn’t work in one-third of epilepsy patients,” notes guidance from University of Utah Health. Those individuals have what doctors call drug-resistant epilepsy, meaning their seizures persist despite treatment. Nationally, about one out of every three people living with epilepsy fall into this category. For these patients, uncontrolled seizures can disrupt school, employment, quality of life, and pose risk of injury.
For centuries, epilepsy has been misunderstood, and too often that misunderstanding has fueled fear. Popular media has sometimes deepened that stigma. In the 1973 film The Exorcist, for example, seizures and altered consciousness were portrayed as symptoms of demonic possession. More recent exorcism-themed films have echoed that idea, equating seizures with spiritual corruption rather than medical conditions. Though dramatic, these portrayals have reinforced damaging stereotypes that those with epilepsy are dangerous, cursed, or beyond help. Advocates and physicians today continue working to dispel such myths, reminding the public that seizures are the result of brain activity—not moral failing or supernatural influence.
Long before Utah became known for its advanced epilepsy care, its institutions mirrored the national trend of harsh and misguided treatment. In Provo, the Utah Territorial Insane Asylum—later renamed the Utah State Hospital—was opened in 1885. People with epilepsy were committed there alongside those with mental illness and developmental disabilities. Instead of individualized treatment, they often faced life-long confinement.
In the 20th century, the hospital became a site for forced sterilizations under Utah’s 1925 eugenics law. Epilepsy was classified as a hereditary “defect,” and dozens of patients were sterilized without genuine consent. Electroconvulsive therapy (ECT) was also applied to epileptic patients in the mid-century, even though ECT is not a treatment for epilepsy and can even provoke seizures. Families in Utah County still carry memories of this history, recalling relatives who were institutionalized, isolated, or denied the right to marry or raise children simply because they had seizures.
Utah is now home to one of the nation’s top-tier epilepsy treatment programs. University of Utah Health operates a Level 4 Epilepsy Center – the highest designation awarded by the National Association of Epilepsy Centers. Only a few centers in the country earn this rating, which means they provide the most advanced diagnostic testing and a full spectrum of treatment approaches for complex cases.
The Level 4 center at University Hospital serves as a regional referral hub for complex epilepsy, offering extensive evaluation and a broad range of therapies, including specialized monitoring and surgery. It remains a high-volume surgical center, with more than 150 epilepsy surgeries performed in 2023 and 2024.
Patients at the University of Utah Epilepsy Center have access to cutting-edge interventions that go far beyond standard drug therapy. A multidisciplinary team of epileptologists, neurosurgeons, neuropsychologists, and nurses works together on each case. Treatment options range from traditional surgery and minimally invasive laser ablation to implantable neuromodulation devices like responsive neurostimulation (RNS), deep brain stimulation (DBS), and vagus nerve stimulation (VNS).
The program is also a leader in research, with over 20 clinical trials of new drugs and devices ongoing. Outcomes show the difference this can make. Surgical treatment can provide seizure freedom for up to 70 percent of well-selected patients, and neuromodulation often cuts seizure frequency in half or better.
For families living outside Salt Lake City, accessing epilepsy specialty care can require extra effort. While community hospitals and neurologists can handle many routine cases, complex patients are often referred to the Level 4 center in Salt Lake City. Telehealth and outreach programs are helping bridge this gap.
University of Utah Health offers telemedicine consultations so patients can connect with epileptologists remotely, reducing the need to travel for initial visits or follow-ups. Its TeleNeurology service also links specialists to regional hospitals 24/7 via secure video, allowing patients to receive expert guidance without leaving their community. If higher-level care or surgery is truly needed, the program helps coordinate transfers to Salt Lake City.
Jordyn is a University of Utah patient and received both the VNS and RNS systems for seizure control. Epileptologist Dr. Amir Arain and neurosurgeon Dr. Ben Shofty are credited with saving Jordy’s life. August, 2025 marks the first two years since her initial epilepsy diagnosis that Jordyn has been entirely seizure-free.
Beyond medical care, families can turn to the Epilepsy Foundation Utah, headquartered in Lehi. The foundation provides education, outreach, and monthly support groups, many virtual, for children, teens, adults, and caregivers. These groups connect families with others who understand their challenges, while also teaching about seizure first aid and fighting stigma.
Contrasting Utah’s past with today’s advances underscores how far the state has come. Once patients with epilepsy were confined and silenced, Utah now leads the Mountain West in surgical and neuromodulation treatment. In the past, families hid their struggles, now community foundations now provide connection and support.
With modern treatments and stronger networks, most people with epilepsy can lead whole, active lives. Early referral to specialty care makes a difference. If local resources are limited, expertise is within reach through telehealth or the drive to Salt Lake City. In Utah, continued outreach and innovation are ensuring that no matter where they live, patients with epilepsy and their families have access to the best care and the promise of a brighter future.
For more information or to access local epilepsy resources, visit the Epilepsy Foundation Utah, Epilepsy Treatment | University of Utah Health and Pediatric Epilepsy | University of Utah Health
