Support For Students With Epilepsy

Helpful resources and expert advice for navigating college

According to the Centers for Disease Control and Prevention, approximately 3.4 million individuals in the U.S. live with epilepsy, with the vast majority being over the age of 17. Epilepsy is a common neurological disorder that creates challenges but not barriers for students planning to attend college. The following guide provides actionable and practical tips, advice, and expert wisdom on how students with epilepsy can prepare for college and thrive once they arrive.

Understanding Epilepsy & Its Impact on College Success

Understanding epilepsy and how it behaves is important to students, families, professors, administrators, and other members of a college campus community. The following section gives an overview of this disorder, how it is diagnosed, and the spectrum by which it affects individuals.

What is epilepsy?

According to the Epilepsy Foundation, this chronic neurological disorder produces unpredictable seizures across a spectrum that vary from person-to-person but can cause additional health problems if left untreated.

What are the major types of seizures?

In 2017, the International League Against Epilepsy outlined three different types of seizures, including:

• Focal onset seizures. This classification of seizures exist in only one part of the brain and may sometimes be called partial seizures. Simple focal seizures may result in sensation changes, such as picking up an inexplicable taste or smell or subtly twitching. Complex focal seizures create feelings of confusion or daze, and the person experiencing them may not be able to communicate for a few minutes. Secondary generalized seizures start in a single part of the brain but then move to both sides, resulting in a combination of focal and generalized seizures.
• General onset seizures. These types of seizures affect the whole or parts of both sides of the brain simultaneously. Within this categorization exist absence seizures or petit mal and tonic-clonic or grand mal seizures. The former may result in rapid blinking or a few moments of looking out into space with no real focus. The latter can result in lost consciousness, falling, crying out, or experiencing jerks and spasms in muscles.
• Unknown onset seizures. This category exists for seizures not yet classified. Researchers may not have identified where they start, or they could be taking place when a person is alone and no one can verify what happened to them or how it affected their cognition or physical behavior.

How common is epilepsy among college students?

Data specific to college students does not exist, but the Centers for Disease Control and Prevention estimate that 5.1 million Americans have a history of epilepsy and an additional 3.4 million have active epilepsy. The Epilepsy Foundation notes that it is the fourth most common neurological disorder in the country and affects individuals across the lifespan.

What causes epilepsy

Epilepsy can be caused by numerous factors. Common causes include brain tumors, head trauma, developmental issues in utero, and strokes. They can also be caused by drinking too much alcohol, getting too little sleep, taking stimulant drugs, or having low blood sugar.

If I have a seizure, does that mean I have epilepsy?

No. The Epilepsy Foundation states that individuals are diagnosed with epilepsy after experiencing two seizures that cannot be explained by any other “known and reversible medical condition.”

Epilepsy and Common Challenges in College

Epilepsy can interfere with learning in college. While it's important to note that no two individuals are the same, it may be helpful to be aware of the realities for these students and how epilepsy can impact college success.

Managing the transition
“The main challenge during the transition to college is going from the protected environment of the home to one where the teen needs to foster greater independence and responsibility to manage their condition,” notes epilepsy specialist Dr. William Gaillard.

Handling ADHD
Approximately 40 percent of kids with epilepsy also receive ADHD diagnoses, adding to their distraction in the classroom.

Recovery time
“If someone has a seizure, expecting them to be able to ‘jump back on the horse' may be unreasonable,” notes UNG disability specialist Thomas McCoy. “Some people may not be able to concentrate for a length of time.”

Developmental issues
According to Spark Epilepsy, children who begin having seizures when their brains are still developing may face developmental interruptions and/or delays.

Following safe practices
“While all students with epilepsy should be encouraged to live a free and independent life that involves doing the things any college student should do, they must also adhere to basic safety rules such as not swimming alone, bicycling without a helmet, or other activities that could cause issues,” says Dr. Gaillard.

4 Things for Students with Epilepsy to Consider When Choosing a School

According to Dr. William Gaillard, “teens should pick a college based on their own interests and needs, and epilepsy should not play a role in their decision.” That being said, some students must consider some factors to ensure they stay safe and healthy while in school. A few things to think about include:

HEALTH SERVICES
“If a student knows they may need frequent trips to the ER, they may want to choose a school that has better medical care,” notes Gaillard. Many schools have university medical hospitals attached to their campuses that can be a lifesaver if they have a serious seizure episode.

DISABILITY SERVICES
Finding a school with robust disability services is beneficial in two ways. First, professionals in this office can help educate professors, administrators, and other students on this condition and how to care for someone experiencing a seizure. Second, these offices can help advocate for accommodations and provide case management for this population.

LIVING SITUATIONS
As Dr. Gaillard discusses later in this guide, living situations should be carefully considered by students with epilepsy. Living alone can present challenges to those with epilepsy, as they often lose control of their bodies during a seizure. Living with a roommate can help ensure someone is there to protect them from injury and ensure they do not choke during the seizure.

CAMPUS CULTURE
In addition to managing epilepsy with medications, there are many environmental factors that contribute to how many seizures individuals experience. When picking a school, consider things like culture. “Students need to be mindful of managing their sleep and alcohol intake, as sleep deprivation and alcohol lowers the seizure threshold,” notes Gaillard. If a school is known for being extremely rigorous or has a party culture, it might not be the best fit.

Academic Accommodations for College Students with Epilepsy

Accommodations at college can help students with epilepsy feel supported and help them keep from worrying about how a missed class or exam may affect their GPAs. Common accommodations include:

• Excused Absences
  “If a student is out due to their barrier, this accommodation allows the student to not have their absence counted against them as it would in other circumstances,” notes McCoy. “This will allow them to make up any missed examinations, projects, or assignments.”
• Rescheduling
  Students sometimes can't just bounce back from a seizure—they need time. Allowing these students to reschedule exams helps them reset and show their full potential and mastery of the class.
• Scribe
  “Notetakers can help with any missed classes,” says McCoy. By having someone who writes down the main points of the class—or a professor who sends prepared notes—students can feel involved even if they can't be present.
• Priority Registration
  “This allows students to take classes during times that their medications are most effective,” notes McCoy. “Some students have seizures at night, so evening classes would not be appropriate. Others have them when they get tired, so late morning or early afternoon classes would be better.”
• Plans of Action
  “These can help students with frequent seizures by creating a protocol that can be shared with professors and emergency personnel to dictate the student's choices during an emergency situation,” says McCoy. “These have helped students a number of times, especially if they aren't cognizant enough to communicate effectively.”

Receiving Accommodations

• Set up a meeting. Even before starting school, students can set up a meeting with disability services to register their disabilities.
• Provide documentation. In order to receive accommodations or special services, students must provide current documentation from a medical professional. High school IEPs usually do not count. The university should provide details on acceptable forms of documentation.
• Talk over accommodations. Discuss with the disability services administrator any previous accommodations you've had in the past, how effective they were, and what might be suitable at this level. Ask for a letter from the staff member that you can provide to professors.
• Speak with professors. Show the letter from disability services to your professor and discuss within your level of comfort specific accommodations you might need in their class.
• Evaluate effectiveness. Even if specific accommodations worked for you in high school, that doesn't mean they will at the college level. Monitor their effectiveness and, if need be, speak with disability services to edit your list.

Disclosing Your Disability: Who to Tell & What to Tell Them

Sharing your epilepsy diagnosis can feel awkward, according to Dr. William Gaillard, because of the stigma surrounding this neurological disorder, but that shouldn't stop you from telling those who need to know. “It's important that certain people know so they can help if needed,” says Dr. Gaillard. “Studies show that people with a roommate are less likely to die with epilepsy—your resident assistant and student health system should also be aware.”

Thomas McCoy, Director of Student Disability Services at UNG, echoes these sentiments. “Students tend to weigh carefully who they want to tell, as stigma or concerns about what other people think or how they may react can influence these decisions,” he notes. “The impact of epilepsy in frequency and intensity can play a factor in their decision, making it a really personal choice. Individuals around the student should respect their choices and maintain their confidentiality when they decide to disclose.”

Deciding to disclose that you have epilepsy is very personal, so consider these questions even before arriving at college. As McCoy notes, the severity in which you experience seizures can greatly affect your decision-making process. For some students, there may be no option but to tell disability services, professors, roommates, and others around campus. For those with less severe seizures, they may not need to share this information with as many individuals. Speak with your doctor, as she/he may be able to provide insight.

15 Scholarships for College Students with Epilepsy

Students with epilepsy and their families know that managing this condition can cost a lot of money. When combining those costs with college tuition and fees, it can feel overwhelming. Fortunately, many scholarships exist to help offset costs for this population.

Additional Resources

In addition to the information and guidance provided throughout this page, many organizations work to help those with epilepsy and their families flourish while in college and beyond.

• Attending College with Epilepsy. The Epilepsy Foundation shares advice for students who want to make the most of their time at school while ensuring they stay healthy and happy.
• Epilepsy Community Forums. Students can find support, guidance, and inspiration from these online forums where individuals with epilepsy share about their experiences.
• National Organizations Dedicated to Addressing Epilepsy. The Centers for Disease Control and Prevention offers a list of organizations and foundations working to support those with epilepsy and expand research.
• Preparing for College with Epilepsy. EpilepsyU offers lessons from students who already graduated and successfully navigated epilepsy while at school.
• Preparing Young Adults with Epilepsy for College. Texas Children's Hospital shares advice for both parents and teens in this comprehensive article.
• Teaching Students Who Have Epilepsy. Indiana University of Pennsylvania provides education and resources to professors working with students who have epilepsy.
• What Student Life Is Like for Me as Someone With Epilepsy. Student Shannon Leigh shares her experiences for students who want to get a day-in-the-life view of attending college with epilepsy.