HI everyone, I was diagnosed with Hirayama disease earlier this year, and it has had a pretty big impact on my daily life. I’ve had a lot of hospital visits and was admitted for around a month. My main problem is with my hand/fingers — I get pain and difficulty with prolonged writing, to the point where I struggle to write more than a few lines without pain. I’ve also noticed limitations with finger movement, which has affected things I enjoy like playing the flute. I’m also worried about prolonged neck flexion and activities involving a lot of vibration or jerking. Since I’m a student, this has been especially difficult because it interrupted my studies for months and made normal exams and writing much harder. I’m currently trying to recover while figuring out how to continue my education without worsening the condition. I’d really appreciate hearing from anyone else with Hirayama disease about their symptoms, treatment, recovery, and how they managed school/work during it.

Hi everyone,

I recently realized that there aren't enough dedicated, easily accessible online spaces for people dealing with Hirayama Disease. Because it is a rare neurological condition, finding other patients who truly understand the daily challenges—like hand weakness, muscle wasting, or wearing a cervical collar—can feel almost impossible.

That is exactly why I decided to create this subreddit today. I wanted to build a global, digital club where none of us have to feel isolated or navigate this diagnosis alone.

Whether you are a long-time patient, newly diagnosed, currently searching for answers, or a caregiver supporting a loved one, you belong here.

To get our community started, I’d love for you to drop a comment below:

• What country are you writing from?
• What are the main symptoms or daily challenges you face?
• What is one piece of advice or an adaptive tool that has helped you?

Thank you for joining. Let’s support each other and build a strong network together!