Caitlin Kindberg Shares Her Patient Experience Living With Idiopathic Hypersomnia

It's important that patients with idiopathic hypersomnia (IH) continue to advocate for themselves and push for better treatment despite challenges, Caitlin Kindberg, patient advocate in Nashville, Tennessee, explained to The American Journal of Managed Care® (AJMC®) at the SLEEP 2024 Annual Meeting.

Transcript

How did you learn you had idiopathic hypersomnia?

I was always a pretty sleepy kid. I thought it was more of a personality trait of mine, and I really didn't understand that what I was experiencing was abnormal. So, after many, many years, I actually met a stranger at a friend's birthday party and started explaining some of my symptoms with him, and he was a respiratory therapist. So, he was the one who actually recommended that I see a sleep specialist. At my first appointment, I really knew that I was in the right place to get a diagnosis just based on the questions that my provider was asking me. And after a 24-hour sleep study, the results of that led to my diagnosis of idiopathic hypersomnia at 25 years old.

Can you share your overall patient experience as someone living with idiopathic hypersomnia?

As someone living with idiopathic hypersomnia, my patient experience has been pretty frustrating. After receiving the diagnosis, I was relieved because now I had a name for my symptoms, but the fact that IH is rare and a chronic disease makes it pretty challenging. So, finding a sleep specialist that knew what IH was and how to properly treat it took a few years.

How does idiopathic hypersomnia affect mental health and emotional well-being?

Idiopathic hypersomnia affects pretty much every aspect of one's life, but I would say especially your mental and emotional well-being. My quality of sleep directly impacts my mood, and I never get quality sleep. So, this can sometimes lead to me having a short fuse, being easily irritated, and snapping over something that's pretty minor, or I just feel extremely sad or anxious for seemingly no reason. I feel like again, it's kind of like part of my personality traits. People describe me as overly sensitive and emotional, but I think it's primarily due to my lack of quality sleep because I noticed on days where my IH symptoms are worse, so is my mood.