Young Man’s Epilepsy Diagnosis Fuels Advocacy Work
DRACHTEN, Netherlands – At 26, Marcel de Vries is navigating a life significantly shaped by epilepsy, a neurological condition he’s lived with since age 13. While his friends enjoy typical young adult freedoms, de Vries carefully considers nearly every aspect of his daily routine, a reality that has spurred him to launch the Epilepsy Loop, an initiative aimed at raising awareness and support for those living with the disorder.
Epilepsy affects an estimated 65 million people worldwide, according to the World Health Organization, and can manifest in a variety of seizure types, impacting daily life in profound ways. De Vries’ experience highlights the challenges faced by many, including limitations on activities like driving and consuming alcohol - both potential seizure triggers. His story underscores the need for greater understanding and resources for individuals and families impacted by epilepsy, a condition often shrouded in stigma and misinformation.
de Vries’ biggest frustration stems from the inability to drive a car, leaving him reliant on others for transportation. “It’s a constant consideration,” he explains. Despite this limitation, he maintains a degree of independence by commuting to his job in Drachten each day via moped.
The unpredictable nature of his seizures is a constant presence. “I then fall to the ground out of nowhere,” de Vries recounts. ”My arms and legs then start to shake and I lose consciousness. That lasts about four minutes. After that, I am still partly unconscious. It then takes a while before I recover properly and can communicate normally.”
recognizing the pervasive impact of epilepsy, de Vries founded the Epilepsy Loop to connect with others, share experiences, and advocate for improved support systems. He hopes his efforts will not only raise awareness but also empower individuals living with epilepsy to live fuller, more independent lives.