Non-24 Disorder Can Throw Your Entire Life Off Schedule

My cousin, Richard, lost his sight to retinitis pigmentosa when he was 35 years old.

He adjusted considerably well due to his vision loss being so gradual. He had already attended various rehab facilities to learn how to navigate the world with his white cane; and when he acquired Ruby Lou, his yellow lab service dog, he sent out “birth” announcements to let us know we had a new member in the family.

dog tired bed sleepy plop
Make yourself at home, pup. Source:

Richard was able to continue working at his customer service job, and it seemed like everything was going well—except for one aspect of his life: He was constantly exhausted. Not the “Oh, I think I’ll take a little nap” kind of tired. No, he was flat-out exhausted to the point where he was falling asleep at work, or even in the middle of eating dinner.

Richard’s GP had no idea what was causing the fatigue.

His blood tests came back normal, as well as his muscle function tests; even the MRI and CT scans didn’t provide a clue. So, being a good doctor, he referred Richard to a sleep specialist, and the results were astounding.

Richard was diagnosed with non-24-hour-sleep-wake-disorder, a circadian rhythm disorder that results from the body not being able to determine the difference between night and day.

This was directly tied to the fact that Richard is completely blind with no light perception at all. He would wake up at 1 a.m. thinking it was time to get up, only to discover it was the middle of the night. His body would then shut down mid-afternoon thinking it was time to go to bed. Simply put, his body was out of sync with the 24-hour cycle.

Fortunately, Richard is being treated for the disorder, and he’s doing very well.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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