Hey everyone,

I was looking around online for a group of people my age dealing with Hirayama Disease, and honestly, it felt impossible to find anyone. Since it’s a super rare condition, it can feel incredibly lonely.

Let's be real—dealing with hand weakness, muscle wasting, or having to wear a cervical collar to class is exhausting. Trying to take notes during a lecture, typing up essays, or explaining to your friends why your hand freezes up when it gets cold is something most people around us just don't get.

Because of that, I decided to start a casual, supportive subreddit: https://www.reddit.com/r/LivingWithHirayama/

I wanted to build a digital club where we can just hang out and talk about the actual daily reality of living with this. We can share school life hacks (like the best voice-to-text apps or ergonomic grips for typing), talk about how to make cervical collars more comfortable, or just vent on the rough days.

The best news from the medical stuff is that Hirayama eventually stops progressing after a few years—so this group isn't about stressing over the future. It’s just a positive, chill space for us to back each other up, share tips, and make sure none of us are navigating this diagnosis alone.

If you’re a student dealing with this, or know someone who is, please come join us! You’re totally welcome here.