Epilepsy support & resources from people who’ve been there

Seizure Risk to Seizure Reality:

There are moments in our lives where we wish we could go back and help our younger selves.

These are stories about life with epilepsy,  from the triumphs to overcoming the hurdles. We hope these words can support you – wherever you are in your journey.

Children and Teens

Dr. John’s Story

Diagnosed with epilepsy at the age of 16.

“During childhood and teenage years, epilepsy can aggravate or create problems of low self-esteem, dependency, mood swings, or behavior.”¹

SCHOOL

“Schedule a meeting at the beginning of each school year with your teachers, you can talk about absences for medical appointments, or seizures, especially gym class!”²

SCHOOL

“Let your friends, trusted teachers, the nurse know about your medications, and what to expect, like drowsiness, memory loss, and problems focusing”²

SCHOOL

“If you’re just starting to date someone, share your diagnosis and explain how they can help. Communication is key.”³

DATING

Young Adults

“Be empowered, knowledgeable.
Ask about things you don’t understand.”

“Life’s very different from high school – and that’s a good thing. You’ll have more flexibility in your schedule and timing for getting your degree.”

COLLEGE

“Speak to your instructors at the beginning of each semester and let them know about your epilepsy. This will help if you need a deadline extension or any other extra support you may need.”⁴

COLLEGE

“Ask your care team to help you with any additional needs. For example, you may need certain documents to receive extra time to complete exams or a way to record classes.”⁴

COLLEGE

“Play to your strengths and discover a job you enjoy doing. Stress can increase the frequency of seizures.”⁵

CAREER

“Keep an eye on how you’re spending free time. Not enough sleep can be a trigger.”⁵

CAREER

“Let your coworkers know about your epilepsy and how they can help if you have a seizure at work.”⁴

CAREER

“Get to know your epilepsy, and the care you require, and keep your care team close.”⁴

LIVING ON YOUR OWN

“Make sure your roommates, friends, and coworkers are aware of your condition and know how to provide help if you need it.”⁴

LIVING ON YOUR OWN

“Just because you live alone, doesn’t mean you are alone! Be a member of your local epilepsy organizations and find your community.”⁴

LIVING ON YOUR OWN

Caregivers

“Epilepsy can be very isolating, but it shouldn’t be. Find mentors who understand what you and your family are going through.”

“As the caregiver of a loved one with epilepsy, you know more than anyone that creating a strong support system is critical. But you too need a support system as the one who is providing care.”⁶

SUPPORT

“Look for signs of burnout, like feeling worried or overwhelmed all the time, irritated, or distant.”⁶

SUPPORT

“I found ways to help me with caregiver stress, like making time for myself, talking to a mental health professional, and having a plan for when seizures would strike.”⁶

SUPPORT

“Remember that you’re on a journey! No two days will be the same; you’ll have a lot of challenges, but also a lot of victories.”⁶

SUPPORT

Get Resources

Looking for ways to stay supported in your daily life?

Download these free resources for information and conversation starters with your doctor.

Build your  treatment plan

Use this tool with your doctor to discuss your current treatment plan— and figure out if it’s working for you.

Download

Strengthen your support system

Are you making the most out of your support system? Use these questions and tips to see what areas could be strengthened.

Download

Join the Community

At Catalyst, we are passionate about engaging, energizing and inspiring ourselves and others.

Let’s stay connected and help the epilepsy community grow together.

Learn More

Seizure Risk to Seizure Reality:

There are moments in our lives where we wish we could go back and help our younger selves.

Children and Teens

Dr. John’s Story

“During childhood and teenage years, epilepsy can aggravate or create problems of low self-esteem, dependency, mood swings, or behavior.”1

SCHOOL

“Schedule a meeting at the beginning of each school year with your teachers, you can talk about absences for medical appointments, or seizures, especially gym class!”2

SCHOOL

“Let your friends, trusted teachers, the nurse know about your medications, and what to expect, like drowsiness, memory loss, and problems focusing”2

SCHOOL

“If you’re just starting to date someone, share your diagnosis and explain how they can help. Communication is key.”3

DATING

Young Adults

“Be empowered, knowledgeable. Ask about things you don’t understand.”

“Life’s very different from high school – and that’s a good thing. You’ll have more flexibility in your schedule and timing for getting your degree.”

COLLEGE

“Speak to your instructors at the beginning of each semester and let them know about your epilepsy. This will help if you need a deadline extension or any other extra support you may need.”4

COLLEGE

“Ask your care team to help you with any additional needs. For example, you may need certain documents to receive extra time to complete exams or a way to record classes.”4

COLLEGE

“Play to your strengths and discover a job you enjoy doing. Stress can increase the frequency of seizures.”5

CAREER

“Keep an eye on how you’re spending free time. Not enough sleep can be a trigger.”5

CAREER

“Let your coworkers know about your epilepsy and how they can help if you have a seizure at work.”4

CAREER

“Get to know your epilepsy, and the care you require, and keep your care team close.”4

LIVING ON YOUR OWN

“Make sure your roommates, friends, and coworkers are aware of your condition and know how to provide help if you need it.”4

LIVING ON YOUR OWN

“Just because you live alone, doesn’t mean you are alone! Be a member of your local epilepsy organizations and find your community.”4

LIVING ON YOUR OWN

Caregivers

“Epilepsy can be very isolating, but it shouldn’t be. Find mentors who understand what you and your family are going through.”

“As the caregiver of a loved one with epilepsy, you know more than anyone that creating a strong support system is critical. But you too need a support system as the one who is providing care.”6

SUPPORT

“Look for signs of burnout, like feeling worried or overwhelmed all the time, irritated, or distant.”6

SUPPORT

“I found ways to help me with caregiver stress, like making time for myself, talking to a mental health professional, and having a plan for when seizures would strike.”6

SUPPORT

“Remember that you’re on a journey! No two days will be the same; you’ll have a lot of challenges, but also a lot of victories.”6

SUPPORT

Get Resources

Looking for ways to stay supported in your daily life?

Build your treatment plan

Strengthen your support system

Join the Community

At Catalyst, we are passionate about engaging, energizing and inspiring ourselves and others.

There are moments in our lives where we wish we could go back and help our younger selves.

“During childhood and teenage years, epilepsy can aggravate or create problems of low self-esteem, dependency, mood swings, or behavior.”¹

“Schedule a meeting at the beginning of each school year with your teachers, you can talk about absences for medical appointments, or seizures, especially gym class!”²

“Let your friends, trusted teachers, the nurse know about your medications, and what to expect, like drowsiness, memory loss, and problems focusing”²

“If you’re just starting to date someone, share your diagnosis and explain how they can help. Communication is key.”³

“Be empowered, knowledgeable.
Ask about things you don’t understand.”

“Speak to your instructors at the beginning of each semester and let them know about your epilepsy. This will help if you need a deadline extension or any other extra support you may need.”⁴

“Ask your care team to help you with any additional needs. For example, you may need certain documents to receive extra time to complete exams or a way to record classes.”⁴

“Play to your strengths and discover a job you enjoy doing. Stress can increase the frequency of seizures.”⁵

“Keep an eye on how you’re spending free time. Not enough sleep can be a trigger.”⁵

“Let your coworkers know about your epilepsy and how they can help if you have a seizure at work.”⁴

“Get to know your epilepsy, and the care you require, and keep your care team close.”⁴

“Make sure your roommates, friends, and coworkers are aware of your condition and know how to provide help if you need it.”⁴

“Just because you live alone, doesn’t mean you are alone! Be a member of your local epilepsy organizations and find your community.”⁴

“As the caregiver of a loved one with epilepsy, you know more than anyone that creating a strong support system is critical. But you too need a support system as the one who is providing care.”⁶

“Look for signs of burnout, like feeling worried or overwhelmed all the time, irritated, or distant.”⁶

“I found ways to help me with caregiver stress, like making time for myself, talking to a mental health professional, and having a plan for when seizures would strike.”⁶

“Remember that you’re on a journey! No two days will be the same; you’ll have a lot of challenges, but also a lot of victories.”⁶

Build your  treatment plan