At 11 years old, Emilie experienced her first seizure – a sudden, disorienting moment that marked the beginning of a lifelong condition. What followed was a journey into a world of trial-and-error medication, debilitating side effects and uncertainty that would shape her life through every stage of growing up.
Today, Emilie is 29 and lives with drug-resistant epilepsy (DRE), a form of the condition that does not respond to standard treatments. Her journey since diagnosis has involved many challenges, but also a steady commitment to living fully, finding ways to adapt, stay resilient, and shape a life on her own terms.
Adapting to Uncertainty
Living with DRE means planning your life around the unknown. Emilie describes her seizures as sudden and unforgiving. A seizure can happen anywhere. On a staircase, crossing a street, even in the middle of a good day.
“Sometimes I can go months without a seizure, and then suddenly it happens. I just collapse without warning. I'll lose consciousness and feel completely exhausted afterwards," she describes.
In one instance, Emilie fell from a low wall on to concrete asphalt, suffering a head injury so severe she needed plastic surgery and temporary mobility support. It wasn’t an isolated incident.
Over the years, she’s learned what precautions to take. Sleep and routine are essential. So is trusting her own intuition and judgement.
“I’ve accepted that I can’t control everything. I do what I can: take my medication, follow my doctor’s advice, and try to live my life.”
A Puzzle with No Clear Answer
Like many people diagnosed with DRE, Emilie has tried an exhausting list of medications, often trading seizures for debilitating side effects. Managing her condition has been a constant recalibration of treatments and tolerability.
“Even when something worked, I had to stop because of how sick it made me feel. It’s always a balance between effectiveness and being able to live your life. It’s like a puzzle you’re constantly trying to solve,” she says.
Choosing Herself
A few years ago, Emilie was living in Italy, working, socializing, and building a life she loved. But after a particularly dangerous seizure and growing anxiety, she made the decision to return to Denmark, closer to family and the healthcare system that felt familiar.
"It was one of the hardest decisions I’ve made, especially because I never got to say goodbye to anyone. But I had to put my safety and mental health first."
Today, she’s in a municipal rehabilitation program and hopes to regain enough stability to live independently, and one day start a family.
“I’d love a life that doesn’t revolve around caseworkers and special programs,” she says.
A Voice in Research
As Neumirna explores new treatment possibilities for people living with drug-resistant epilepsy, Emilie’s story helps bring the patient perspective into focus. By speaking openly about her experiences, she hopes to help other patients feel seen, but also to remind researchers to listen – not only to the data, but also to the people living with the condition every day.
Emilie knows her condition may not change overnight, but she believes in the power of sharing her experience. “I’m not a scientist. I can’t cure epilepsy. But I can be part of the process by telling my story,” she says.
To researchers and healthcare professionals, she offers a thoughtful reminder grounded in her own experience:
"It's so important to see the person behind the diagnosis. Some of my most meaningful experiences in care have been when healthcare professionals recognized me beyond my epilepsy. Feeling truly seen makes all the difference."
Beyond her role in shaping research, Emilie also hopes her story can offer reassurance to others navigating life with epilepsy.
“Even if your life looks different, it can still be yours. I work, I shop, I clean, just like everyone else. Don’t let the diagnosis define you.”
