Young Man’s Epilepsy Diagnosis Fuels Advocacy Work
DRACHTEN, Netherlands – At 26, โMarcel deโข Vries โis navigating aโ life significantly shaped by epilepsy, a neurological condition he’s lived withโข since ageโ 13. While his friends enjoy typical young adult freedoms, de Vries carefully considers nearlyโฃ every aspect of his daily routine, a โฃreality thatโฃ has โขspurredโ him to launch the Epilepsy Loop, an initiativeโ aimed at raising awarenessโฃ and support for those living with the disorder.
Epilepsy affects an estimated 65 million people worldwide, accordingโ to the World Health Organization, and can โmanifestโ in โa variety of seizureโ types, impacting daily life in profound ways. โคDe Vries’ experience highlights the challenges faced by many, includingโข limitations โon activities like driving and consuming alcohol โ- โขboth potential seizure triggers. His story underscores the need for โฃgreater understanding and resources for individuals and โคfamilies impacted by epilepsy, a condition often shrouded in stigma and misinformation.
de โฃVries’ biggest frustration stems from the inability to drive a car, leaving him reliant on others for transportation.โข “It’s a โขconstantโข consideration,” he explains. Despite this limitation, he maintains a degree of independence by commuting to his job in โDrachten โeach day via moped.
The unpredictable nature of his seizuresโ is a constant presence. “I then fall to the ground out of nowhere,” de Vries recounts. โฃ”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 โtakes a while โbefore I recoverโข 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 โwill not only raise awarenessโข but also empower individuals living with epilepsy to live fuller, more independent lives.