Why I Decided to Write Demystifying Epilepsy

When I began writing Demystifying Epilepsy, my goal was not simply to add another health book to the shelves. I wanted to build a bridge, a bridge between medical science and everyday understanding, between silence and open conversation, and most importantly, between misinformation and truth.

For too long, epilepsy has been clouded by myths, misconceptions, stigma, and fear. Even in today’s age of information, many people still hold outdated beliefs about what epilepsy is, what causes it, and how it should be treated. These gaps in knowledge are not harmless. They lead to delayed diagnosis, unsafe responses during seizures, poor adherence to treatment, and tragically, preventable outcomes such as uncontrolled seizures, status epilepticus, and sudden unexpected death in epilepsy (SUDEP).

My Story: When Misinformation Becomes Dangerous

My own journey is what first inspired this book.

When I was diagnosed with epilepsy, I refused treatment. Fear and misinformation held me back. I worried about stigma, about side effects, and about being labeled. Where I come from, healthcare professionals often write “KNOWN EPILEPTIC” prominently on your treatment card. From that moment, everything changes. Most healthcare providers will see the label first, and for most, their perception of you shifts.

I have epilepsy, but I am not “an epileptic.” I am a person with epilepsy. I go to clinics for other health concerns, yet everything suddenly becomes linked to epilepsy. For 13 months, I endured repeated seizures, each one more dangerous than the last, each one eroding my health, safety, and confidence.

It was only when one physician took the time to explain why I needed medication to control the seizures that I finally began treatment. Still, a gap remained. I knew I had to take medication, but I didn’t fully understand what epilepsy was or why it happened. That moment, however, changed everything. From then on, I took my medication, regained control, and began to live more fully.

All the questions in my head pushed me to seek knowledge for myself. I refused to wait for doctors to explain. I was the one having seizures and I needed to understand what was happening to me. I became deeply involved in my treatment and care, refusing to leave everything in the hands of others.

That experience gave me my mission: to ensure no one else suffers from misinformation and needless fear the way I once did.

The Gaps I Wanted to Close

Demystifying Epilepsy was written to close the very gaps that once held me hostage:

• From misinformation to knowledge: So families, friends, and communities can respond with understanding.

• From myths and misconceptions to facts: Because myths lose their power when faced with truth.

• From stigma to empathy: So no one feels ashamed of a condition they did not choose.

• From fear to preparedness: Because knowing how to respond during a seizure can save a life.

• From silence to conversation: Because open dialogue reduces isolation and misunderstanding.

• From poor adherence to informed care: Because following treatment guidelines improves seizure control and quality of life.

Why Knowledge Matters

Epilepsy affects millions of people worldwide, across every age, culture, and community. Yet awareness remains uneven. Knowledge is powerful because it:

• Enables faster, safer responses during seizures.

• Reduces stigma in schools, workplaces, and families.

• Prevents avoidable complications from untreated or uncontrolled seizures.

• Improves quality of life through empathy, inclusion, and support.

Knowledge changes everything. It transforms fear into preparedness, and prejudice into understanding. It saves lives, protects dignity, and builds bridges of hope.

My Promise to Readers

In Demystifying Epilepsy, I bring together up-to-date scientific research and lived experience. This is not a dense medical textbook. It is a guide for people with epilepsy, their families, healthcare professionals, and anyone who wants to be an informed ally.

I believe conversations about epilepsy must move beyond hospitals and into our homes, schools, workplaces, and communities. The more we talk, the less room there is for stigma. The more we learn, the fewer lives are lost to misinformation.

This book is only the beginning. Through ongoing blogs and resources, I will continue the mission of Demystifying Epilepsy: turning awareness into action, and replacing fear with knowledge.

Because when it comes to epilepsy, knowledge isn’t just power. It is survival.