Putting the spotlight on Non-24-Hour Disorder5 min read

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Most of us have experienced trouble sleeping at one time or another. I have struggled with sleep problems most of my adult life.  I am not alone because many of my friends have the same challenge. This is normal and usually temporary, due to stress or other outside factors.  But, imagine if your sleep troubles were not temporary, but rather a continuous presence in your life? This is the experience in some people who are totally blind and may be suffering from a condition called Non-24-Hour Disorder (Non-24).

 Non-24 is a serious, chronic circadian rhythm disorder that primarily affects people who are totally blind. Actually, up to 70% of people who are totally blind have Non-24. Wow! I have been working in the disability field for many years, focused on inclusion of people with disabilities in the workforce, including people who are blind, but I had never heard of Non-24 until I saw a post on a LinkedIn group.  As I read about the condition, it occurred to me that my blind friends and network needed to learn more about it.

Here’s what I learned: if you are totally blind and have trouble falling or staying asleep at night and fight to stay awake during the day, you likely experience periods of exhaustion and affected mood, as well as serious disruptions to your life, both at work and at home. These complications can make you feel caught in—and isolated by—a frustrating, sometimes debilitating, cycle of sleeplessness and exhaustion.

Sleep problems can interrupt work, affect day-to-day interactions, and make people less able to handle some of the normal stresses in their lives.  I can’t even imagine the frustration of people who are totally blind having the irresistible need to fall asleep in the middle of the day, a commonly reported symptom of Non-24.

It was interesting to learn about this circadian rhythm disorder, which is prevalent in people who are totally blind, and its impact on their lives.

Many of the symptoms of Non-24, including the inability to sleep at night and an overwhelming urge to sleep during the day, can have a negative impact on energy, emotional balance, productivity, and overall health.

To understand Non-24, you have to understand what circadian rhythms are.  Our circadian rhythms tell us when to sleep, when to eat, and when to wake, among other things. These rhythms are controlled by our master body clock. Apparently, most people’s body clock is a little longer than 24 hours—mine, yours, etc. Every day, light sends a signal to the brain to reset the body clock back to 24 hours. In people who are blind with no light perception, the body clock is left to run its natural course. So if your body clock is 24.5 hours, today you’re a half hour behind; tomorrow you’re an hour behind. This continues until your natural rhythms have you sleeping during the day and awake at night, and the cycle begins all over again.

Like any condition, the symptoms and severity of their impact can be different from person to person.  For some people, symptoms can be mild, and for others they are worse.  Symptoms may also become more disruptive during stressful times.

Though Non-24 is not a sleep disorder, in people who are totally blind it looks and feels like one.  Its primary effects are sleeplessness and exhaustion.  If you are totally blind and have Non-24, you could suddenly fall asleep at the wrong moment—such as at work, at a meal or in a class—potentially embarrassing yourself or creating stress about performance at your job.

People living with Non-24 often get disrupted sleep due to the stress and fear of sleeping through the alarm and being late for work.  You might be hesitant to make plans with friends, unsure whether your exhaustion will interrupt them.  It might also mean you fight to stay awake.  At work you might take copious notes just to stay occupied and to keep from nodding off.

Many people with Non-24 feel like no one else has this problem.  But many, many people do.  Since it affects 70% of people who are totally blind, that means between 65,000 and 95,000 people in the United States.  Unfortunately most don’t know they have it or that it even exists.  Many people are relieved to learn about Non-24 and comforted that it is a medically validated condition.

Little has been known about Non-24—but that’s changing. Every day, more people become aware of it, and research is well underway in an effort to help you—and your doctor—manage it.

It is not normal to wake up exhausted because you cannot fall asleep or stay asleep each night when your sleep cycle is out of sync.  Bottom-line: Non-24 could be negatively impacting your life and you don’t have to suffer alone. Please help me spread the word about Non-24.

To learn more about Non-24, please visit www.Non-24.com and sign up to stay connected.  You can also help others by sharing your Non-24 story.  The more we spread the word about Non-24, the more people can be helped.  You can also call health educator at (855) 856-2424 to find answers your questions about Non-24 Monday through Friday from 8am to 8pm Eastern Standard Time.  That’s (855) 856-2424.

Disclaimer: Ruh Global is a Strategic Communications & Digital Marketing firm helping corporations strategically include People with Disabilities in the workforce.  We also help clients assure their online communications are fully accessible.  I wanted to disclose that one of my clients works with Vanda Pharmaceuticals.  However, it is important to me to help spread the word about Non-24 and its effects on people with disabilities in the workplace.

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