Midnight in the Garden of Non-24 Sleep-Wake Disorder: How Much Do You Know?

It’s time to lift a very rare condition called Non-24 Sleep-Wake Disorder, or Non-24, from the shadows so that those who are living with it can be better understood.

For many people with Non-24, they bear a double burden of not only having the disorder, but also being judged as lazy or uncaring, in addition to a host of other negative perceptions.

Everybody has what is called a “circadian rhythm cycle.” This informs the body when it’s night and day, when it’s time to sleep, and when it’s time to wake up.

For most of us, that cycle is completed roughly every 24 hours. When the cycle is disrupted, the person’s body may run on a different clock. He or she may only feel drowsy and be able to fall asleep every 27 hours. So think of it this way: that person is losing three hours of sleep every day.

If I go to bed and fall asleep by 11 PM, they aren’t ready for the boat to Dreamland until 2 AM. I bounce out of the bed ready to greet the day at 7 AM, but the person with Non-24 isn’t ready to rise and shine until 10 AM.

The more disrupted the cycle becomes, the harder it is for the person to function in normal society.

Particularly if a job requires them to be present at 9 AM. This is where the accusations of laziness begin. The person is chronically late, and if they do make it to work on time, they are likely in a state of exhaustion.

My explanation is very simplistic, but the truth is, Non-24 is extremely complex. A person’s sleep cycle can go to every 30 hours, or 40. It varies from day to day, week to week, and month to month. What is obvious is lack of sleep compromises almost every area of daily life.

One man with the disorder recalls his friends being furious with him when he slept through another friend’s funeral. He honestly couldn’t help it. It was the first time he’d slept in 48 hours. He had no idea what was ruining his life had a name.

Non-24 is diagnosed through sleep studies, and by noting the patient’s complete health history.

There is treatment available in the United States with a drug called HETLIOZ® (tasimelteon).

If you have Non-24, it’s worth talking to your doctor about this treatment option, because the disorder won’t go away on its own, but the potential for managing it is there.

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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