Last year, when I was 15, I was diagnosed with a brain disease. Biotin thiamine responsive basal ganglia disease. Even now, at 16, saying the name still feels unreal.
It’s a condition so rare that only around 23 known cases exist globally. There are no familiar stories to compare yourself to, no clear roadmap, and very little reassurance. When something is that rare, it’s not just the illness that’s frightening, it’s the unknown.
For those who knew me when I was ill, you may remember how suddenly everything changed. For those who didn’t see me at all during that time, it’s hard to explain just how serious it was. Rare illnesses often happen quietly. People disappear from school, from social spaces, from everyday life, and the world keeps moving as if nothing happened.
What affected me most was realising how young I was.
When you look up diseases, you mostly see older people. When it affects younger people, the stories often end badly. That’s something no one really says out loud, but you feel it. It stays with you. Being young and seriously ill forces you to think about things most people your age never have to consider.
I don’t know what the future holds. I can’t pretend I do. Living with a rare brain condition means living with uncertainty, learning to sit with questions that don’t have answers yet. Some days that’s easier than others.
But I do know why I want to share this.
I want to help someone else feel less alone.
When you’re dealing with something rare, it’s incredibly isolating. You don’t see people your age going through the same thing. You don’t see yourself reflected anywhere. And that can make you feel invisible, even when you’re fighting something very real.
If someone out there is going through a similar experience, especially someone young, I hope this reminds them that they’re not alone. That being ill doesn’t make you weak. And that surviving something rare and scary is something to be proud of, even if you’re still figuring out what comes next.
I’m still here. I’m still learning. And if sharing my story helps even one person feel seen, then it’s worth telling.
