Stories behind Milo&Me: Sylvie

Meet our group chat member Sylvie & her story!



9/23/20221 min read

Hi! My name is Sylvie, and I have had the honor of being one of the amazing girls collaborating on this blog!

I was diagnosed with Jeavons Syndrome(eyelid myoclonia with absence seizures) when I was 13 years old. Then 2 years later, I was also diagnosed with PNES. I have also struggled with my mental health from around age 12/13 because Borderline Personality Disorder and ADHD are commonly diagnosed in those with Jeavons Syndrome.

Despite these obstacles, I have finally felt like I have made progress in controlling my seizures and coping with mental illness. I have found hope in a few different areas(one of which is the Milo&Me group chat). I play soccer and have been able to develop some skills to play 100% while still listening to my body and staying safe. I also love music(both listening and playing). I play guitar, piano, bass guitar, a bit of drums, and voice. I am currently rehearsing for a production of the little mermaid at school.

My favorite activity is going to concerts. I have been lucky enough this year to see Avril Lavigne, Patti LaBelle, the Lumineers, Elton John, waterparks, and My Chemical Romance. When you're struggling, it's important to find even small things like an inspirational song to keep you going.

I’m so excited to be a part of this team that’s bringing awareness and comfort to those who might feel alone in their battle with Epilepsy.

- Sylvie :)