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Commentary: International Epilepsy Day

Seizure disorders are widely misunderstood by the general population, yet most people know someone who has been diagnosed with epilepsy. Treatment and quality of life can be enhanced through improved awareness and understanding of epilepsy—or “the epilepsies”—by those affected by recurrent seizures and by their friends, family, health care providers, teachers, colleagues at work, and strangers met in restaurants or on sidewalks. Epilepsy does not respect international borders. To this end, a day to raise awareness of epilepsy around the world can have meaningful impact. The tuberous sclerosis complex (TSC) community understands the consequences of misunderstanding and the impact of increased understanding. TSC is a rare genetic disorder affecting roughly 50,000 individuals in the United States and 1 million worldwide. TSC causes nonmalignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin, and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability, and autism. Thus, TSC can be considered one of “the epilepsies” in the sense that approximately 85% of those affected by TSC will experience seizures during their lifetime—most commonly in early childhood when the developmental consequences can be severe. Everyone with TSC is affected somewhat differently, much in the way that no two people with epilepsy have identical experiences, which makes it all the more important to make others aware of how such a disorder does or does not affect one’s life. Since 2012, TSC organizations around the world have celebrated TSC Global Awareness Day annually on May 15. Through various activities on social media, a radio media tour, a Congressional briefing, face-to-face gatherings, and lighting Niagara Falls “TSC blue,” more people become aware of TSC each year. Equally important, those affected by TSC and their loved ones have become more empowered to advocate for themselves. There is no single best way to care for someone with TSC; not everyone has access to the same types of medical care, and not everyone is affected by the disorder in the same way. TSC Global Awareness Day brings basic education to the general population and provides those affected by TSC with specific information to help them advocate for themselves and their loved ones in their own way, and in their own language, to best meet their own needs. An International, Global, or World Epilepsy Day to empower those with epilepsy and to educate the global population can make a difference. The epilepsies know no calendars, no religious traditions, and no languages. The choice of date and title should be made rapidly by representatives of the major international epilepsy organizations so that the educational process can begin as soon as possible. The TSC community is eager to participate in a worldwide day for epilepsy education and advocacy to improve the lives of those affected by seizure disorders everywhere.