INTRODUCTION to NON-24

Non-24 Sleep-Wake Disorder is a rare disorder of the circadian rhythm (the body’s internal clock). It is not the same as insomnia, apnea, or other sleep disorders because the sleep itself isn’t typically disordered, the circadian rhythm is. (The circadian rhythm affects more than just sleep and is governed by neurological, hormonal, steroidal, chemical, and environmental processes). When Non-24 patients follow a strict sleep-wake schedule, they often experience the disabling symptoms of sleep deprivation. Because of this, Non-24 patients often require accommodation to work, to go to school, and more. Below, you will find possible accommodations for Non-24 Sleep-Wake Disorder

If a patient with Non-24 is not responsive to treatment, their only option is to follow a “free-running” sleep-wake schedule. Free-running is when you sleep when sleepy and wake when refreshed. For someone with Non-24, their wake time and sleep period typically shifts forward every day and is likely to be unpredictable.

As an example, someone with free-running Non-24 may never be awake on the same schedule for more than a few days at a time.

So, someone with Non-24 who is working a flexible job might work 1^st shift, then 2^nd shift, and then 3^rd shift … all in the course of two or three weeks. Many cases are even less predictable.

The circadian rhythm cannot be reliably or safety controlled with willpower alone. Asking someone with Non-24 to control when they sleep is very similar to asking someone with a fever to control their body temperature with willpower. Requiring someone with Non-24 to wake up at the same time every day may cause serious side-effects of sleep deprivation and is typically neither healthy nor feasible.

According to the Sleep Foundation, in the short run, sleep deprivation can cause:

• Poor or risky decision-making
• Lack of energy
• Mood changes, including feelings of stress, anxiety, or irritability.

For many with Non-24, the effects of sleep deprivation may be heightened and can include:

• Nausea
• Weakness
• Headaches
• Photosensitivity
• Joint/muscle pain
• And more here.

Someone with Non-24 might also experience the effects of long-term sleep deprivation from working an inflexible schedule for weeks or months at a time. According to the Sleep Foundation, these increased health risks can include:

• Cardiovascular diseases
• Diabetes
• Obesity
• Hormone imbalances
• Mental health disorders
• Chronic pain
• Compromised immune system

Several websites also offer similar pages on understanding and accommodating this disorder:

• Sleep Foundation HERE
• Circadian Sleep Disorders Network HERE
  
  

NOTE: Accommodations can and will often look different for each individual with Non-24. While these are helpful suggestions, it’s important to remember employers, educators, caregivers, and loved ones should always work with the Non-24 individual to develop the best possible accommodations.

WORK ACCOMMODATIONS for NON-24

In the U.S., Non-24 Sleep-Wake disorder qualifies as a disability under the terms of the American Disabilities Act. Under the terms of the ADA, most employers are legally obliged to make reasonable accommodations for Non-24, as long as the patient is broadly qualified to do the work. (Source: ADA).

For those with Non-24, flexible work hours are critical. The ability to set your own schedule is important, but, if this schedule is still “set” and required to be followed for any extended period of time, it is not truly flexible. This often cannot be a “set your own schedule” role where the employer requires that same schedule at all times. True work flexibility would allow the employee with Non-24 to be able to change their work hours from day to day or week to week.

Likewise, being required to work only within certain hours is also limiting. As an example, only being able to set a schedule between 9 – 5 limits a free-running person’s work hours by half if they are awake at night the other half of the time. 

Many with Non-24 can work more efficiently when they simply need to meet a deadline rather than work certain hours at specific times of day. Project work, freelance work, remote work, and jobs with truly flexible hours will best suit those with free-running Non-24.  

People with Non-24 can be productive workers when employers make appropriate accommodations.

SCHOOL ACCOMMODATIONS for NON-24

Similar to work accommodations, flexibility is key. Students with free-running Non-24 need to be able to work on the schedule that is healthiest for their unique circadian rhythm.

Educational accommodations for Non-24 Sleep-Wake Disorder include:

• Extra time to complete assignments (flexible deadlines).
• Waived penalties for missing lectures/classes.
• Recorded lectures for later viewing.
• Exceptions for group projects with set meeting times.  

Allowing flexible test-taking times helps accommodate students with Non-24. For example, a student who is required to take a test at 9 AM when their body wants to fall asleep at 7 AM will have an unfair disadvantage than if they could take the test a couple hours after their 4 PM wake time. (Imagine a typical person being asked to wake up and take a chemistry final at 3 AM).

It’s one thing if a student feels unwell occasionally when taking a test or trying to pay attention in class, but when a student experiences slowed thinking, reduced attention span, and worsened memory due to sleep deprivation at least half the time, their academic experience will not be beneficial.  

ACCOMMODATIONS for HOME

This section is in three parts: 1) Family & Friends, 2) Living Together, and 3) Romantic Relationships.

FAMILY & FRIENDS

For many people with Non-24, they and their doctors have not yet found an effective treatment, let alone a cure. This is a difficult disorder to live with as it often limits a person’s ability to lead a normal life—or, at least, it changes what their life looks like. Many times, this is difficult for family and friends to accept. It’s important to remember, the time of day a person with Non-24 sleeps is not under their control. Healthy sleep cannot be controlled with willpower.

The circadian rhythm controls many other aspects of the body, such as our body temperature fluctuations, our guts, and our hunger.

Accommodations for Non-24 Sleep-Wake Disorder go a long way to show you care.

• Make your schedule known to your loved one with Non-24.
  • This makes it easier to set up times when they know you’ll both be free to spend time together. When a Non-24 patient knows when you’ll be free, then they can better know when to reach out.
• Set up a means of communication that isn’t disruptive.
  • A person with Non-24 might want to tell you something but won’t be awake when you are. Have a means of communication they know for sure is silent and won’t disrupt you if they want to leave a message for you at 3 AM, for example, that you’ll see in the morning. Likewise, ensure the app or means of communication won’t disrupt them, too, even if you reach out at an hour that is “typically social.”
• Be kind if group gathering times don’t always line up.
  • Be sure to let your loved one with Non-24 know they’re welcome to show up anytime between the hours of the gathering. Be sure to always let them know the timeframe they’re welcome so they feel confident showing up late or early if needed.   
• If you ask, “Are you going to be awake next Saturday?” Be prepared that someone with Non-24 may not know yet, if at all.
  • Wake and sleep times are often variable and can change quickly. A person with Non-24 may not know if they can attend or not until about 2 – 3 days in advance. Predicting when a Non-24 patient will be awake is even more variable than a future weather report.

LIVING TOGETHER

It can help to make accommodations for Non-24 sleep-wake disorder to the home to help when people living together are sleeping on different schedules.

• Acoustic panels may help keep the living and sleeping areas quieter. These vary in price and material and can be hung on the walls to help keep sound from traveling.
• TV headphones. Devices like a Roku may offer a remote app for a smartphone that allows you to direct the TV sound through the phone and any connected headphones. Headphones that connect directly to a TV are also available.
• Consider assigning chores depending on the time of day they can be done and how disruptive they might be.
• If earplugs are regularly used, consider getting smoke alarms designed for the hearing impaired.

ROMANTIC RELATIONSHIPS

Accommodations for Non-24 Sleep-Wake Disorder in romantic partners will vary a lot based on personal preferences. Romantic partners may need separate beds and/or separate rooms to sleep different hours without disruption. While one partner might prefer to wake with the morning light, the other may need blackout curtains when sleeping during the day. Sleeping in separate beds or separate bedrooms should not be taken as a sign of an unhealthy relationship, as some might think; rather, it shows a willingness to compromise and maintain a balanced relationship.

On this topic, a few Non-24 patients in relationships were surveyed for helpful accommodation ideas. They said,

• “I don’t like being alone. Usually when we are on completely different sleep hours, I come in the bedroom, either in bed or in an armchair. He wears a sleep mask and I can do what I want and leave the lights on. My goal would be to put a TV in the bedroom so I could watch series or movies more comfortably in the same room while he sleeps.”
  • For the patient above, a Roku or similar TV device which allows for wireless headphones may be beneficial.
• “We tend to split household chores according to our sleeping/waking/working patterns. I tend to do the chores that can be done late at night (washing up, baking, cleaning, washing clothes) and he tends to do more of the things that need to be done earlier (shopping, phone calls to services, cooking meals, noisy DIY repairs, etc).”
• Finally, two comments on having a healthy relationship: “The most important thing to me is that my husband believed my diagnosis was real even before I got an official diagnosis. My family didn’t believe me, and having his support has meant a lot.” Similarly, another patient said, “The main thing I really appreciate is that he doesn’t treat my sleep/wake patterns like some kind of problem or inconvenience. Rather he just accepts it as a difference.”

Accommodations for Non-24 Sleep-Wake Disorder vary from case to case. The most appropriate path is to openly discuss what will help improve work, school, and home life for someone with Non-24. To better understand Non-24, visit our FAQ page and then visit our Resources page.

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Sighted Non-24 Sleep-Wake Disorder isn’t well known, even by doctors. Raising awareness is how we will improve the diagnosis and treatment of Non-24. Currently, those who know about Non-24 may not realize sighted people can develop it. This may be the only disorder where people discriminated against because they can see. Sleep disorders are notoriously difficult for people to empathize with…

Even our friends and doctors may unintentionally gaslight us by saying things like, “Yeah, I have a hard time falling asleep sometimes, too.” But Non-24 isn’t just the inability to fall asleep sometimes. It’s a complete deviation in a normal rhythm that is deeply systemic and difficult to manage.

So, here’s what we can do to help raise awareness for this rare and incredibly difficult condition:

Call Vanda

Call Vanda Pharmaceuticals and ask them to be vision-inclusive in their advertising for Hetlioz. Simply let them know there are sighted people with Non-24 and that people like us deserve representation, too.

Only featuring blind people in their advertising makes it difficult for sighted patients to get a prescription for Hetlioz. Doctors watch ads, too, and if they get the impression Non-24 only occurs in blind people, sighted patients my struggle to get diagnosed.

Call them 24/7 at: 1-855-856-2424  

Contact Local News

Contacting your local news can allow you to highlight the oddness, rarity, and difficulty of Non-24. This option is best for people who don’t mind being open about having Non-24 as the news may want to interview you. This is especially important around November 24th for Non-24 Day or Rare Disease Day (February 28th/29th).

Get Featured on This Site

Send us your story. We want to hear about how you (or your loved one) developed Non-24, how you were diagnosed, or how Non-24 affects your life.

We also accept submissions for blog posts, short stories, poems, artwork, and more. Help us show the world what it’s like to have Non-24.

E-mail us at 11sightednon24@gmail.com

Send Postcards

Send postcards to doctors, neurologists, and sleep clinics. We have several different pre-designed post cards. All you have to do is print, stamp, and send them. We recommend looking up addresses for your local doctors. Using card stock or having these printed at a local printer is best. If you don’t have a local printer, Vistaprint is a good company to use.

Do you know of any other ways to help raise awareness?
Let us know!

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Rare Disease Day is February 29th on Leap Years and February 28th other years.

Why do we advocate for Sighted Non-24 on Rare Disease Day?

Non-24 is classified as a rare disease and is featured on the National Organization for Rare Disorders website; they claim, “Non-24 occurs in 55-70% of completely blind people, but also occurs in an unknown number of sighted people.” We do not know how many Sighted Non-24 patients exist because there is so little research. Doctors, too, may often fail to recognize that a sighted person can have Non-24.

Non-24 is typically due to a completely blind person’s inability to sense light. Without light cues, the Circadian Rhythm is thrown off its normal 24-hour track. In most cases, a person’s sleep shifts forward around the clock.

But in Sighted Non-24, the causes are much more varied and unclear.
We want sleep doctors, neurologists, medical professionals, and people around the world to recognize that sighted people can have Non-24, too.
Simply because a disease is rare does not mean it doesn’t exist. According to Global Genes, One in 10 Americans is living with a rare disease.

What are some of the causes of Sighted Non-24?
Among others and unknown causes, patients report their Sighted Non-24 is caused by one or more of the following:

• It may be a neurological disorder with abnormal functioning of the suprachiasmatic nucleus (SCN) in the hypothalamus.
• It could be due to the retina being too sensitive or not sensitive enough to light signals. This may relate to the eye itself or neurological processes.
• Sometimes, Delayed Sleep Phase Disorder can develop into Non-24. This is often due to chronotherapy. Chronotherapy is a “treatment” proscribed by patients with DSPD to try and slowly readjust their sleeping habits. Doctors ask patients to force their sleep to a cycle their Circadian Rhythm is not used to and this can create an elongated Circadian Rhythm leading to Non-24.
• A pituitary adenoma (tumor) can cause Non-24. This is a small benign tumor that disrupts the typical flow of chemicals that control hormones, particularly those related to sleep like melatonin.
• There may also be genetic factors at play. Researchers are currently studying the genetic involvement that may be present in Sighted Non-24. Dr. Alina Patke and her associates at The Rockefeller University are among those studying how genetics are involved in Circadian Rhythms.
• There are likely other unknown causes. The Circadian Rhythm is complex and governed by many factors, including hormonal and neurological. We hope raising awareness will inspire researchers to continue searching.

We advocate for Sighted Non-24 because we need more research, doctors who recognize us, and more treatment options for all the known and unknown causes of Sighted Non-24.

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Put simply, people with Non-24 Circadian Rhythm Disorder (also called Non-24-Hour Sleep-Wake Disorder) have body clocks (Circadian Rhythms) that are NOT 24-hours. Usually, our days are longer. This means the amount of time we’re awake and the amount of time we need to sleep adds up to more than twenty-four hours. We struggle to wake up at the same time every day without feeling permanently jet-lagged, sleep deprived, and non-functional. See our FAQ page for more information.

So, we asked fellow Non-24 patients how they describe their disorder to new people.

“I’ve been recently diagnosed and, so far, after I explain Non-24, I haven’t been able to avoid people asking “have you tried vitamin D/melatonin/just going to bed at the same time?” I think using the term “neurological” or mentioning my neurologist helps. 

I also have a thought experiment I use: 
Imagine that every single day your work starts 1-2 hours earlier. So you start at 8am today, 6am tomorrow, 5am the next day, and so on. When do you sleep? Could you just go to bed earlier every night to compensate?  Would you sleep at all when you’re working schedules like 10pm-6am? How do you plan things knowing your work could be 7-14 hours later next week and you always work an 8 hour shift?
Since I’m on a 25-26 hour rhythm, that’s how it feels for me to wake up at the same time: like waking up earlier and earlier every single day.”
– Hans Vohet

“My body doesn’t seem to respond to day/night light cues, and my circadian rhythm rotates around the clock. I usually sleep about 7-8 hours a day, with 17-18 hours awake, though my cycle is not completely predictable. I sleep fine when I follow my own clock, but get insomnia when I try to sleep early.

When I fight my Non-24 rhythm, I get physically ill with a fatigue buildup that feels like constant jet-lag crossed with a bad hangover. If I push it long enough, I lose the ability to wake up to alarms. When I follow my rhythm, I have fairly normal energy levels, wake up easily, and feel much better!

This disorder is common for blind people and much rarer for people with sight. No one knows for sure what causes sighted Non-24, but a lot of us started out as night owls. In college, I adopted a chaotic sleep schedule to compensate for being unable to wake up early. That may be what messed up my wiring, but I can’t say for certain. My bedtime has rotated involuntarily since around age 20. I resisted my pattern for a decade, until I physically couldn’t fight it anymore. No treatments have worked for me besides free-running.” – Anonymous Non-24 patient

“I try to emphasize the many functions of the circadian rhythm… that it’s not just sleep, that it governs EVERYTHING in the body and is very difficult to change. I gain an hour of jet lag/sleep an hour later every day. Or if they don’t need to know all that, just “I have a sleep disorder.” – Chava Sara Stone

“Depending on the situation, I usually say, ‘I have a circadian rhythm disorder called Non-24’ so that people are more likely to take me seriously than if I just say, ‘I have a sleep problem’ because it is much more serious than a sleepless night here and there. More generally, I usually describe Non-24 as, “a disorder that causes my sleep to shift forward every day. So, I can be waking up at 6AM and then going to bed at 6AM a week later. If I try to have a normal schedule with alarms, I get incredibly sleep deprived and cannot function. I’d end up bedridden, anyway. The difference between forcing my sleep to a ‘normal’ schedule and free-running is my productivity level and my ability to actually live if I sleep my Non-24 rhythm.”
– Liberty Ruth

Wrap-up: Non-24 patients must simplify, use metaphors, and sometimes show people their sleep log to explain their disorder. Being taken seriously by people is a struggle. Often, we run into people who think we can just force our sleep, but this is often due to people taking their Circadian Rhythm for granted. We recognize that typically, people do not realize how powerful the Circadian Rhythm is and how it keeps your body on a constant schedule. It works automatically, so to try and manipulate the Circadian Rhythm is almost impossible. If Circadian Rhythms were easy to manipulate, Circadian disorders would not be so rare and they would be easier to treat. There are many different ways patients explain their Non-24 disorder, but the common connection we have is struggling to explain how debilitating Non-24 is while still being understood.

Screenshots provided by Liberty Ruth unless otherwise noted.

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“Baby mobiles are called “unrest” in Norwegian. I imagined these female unrestful spirits, and it was because of them I couldn’t sleep at night. So I created this oversized baby mobile, which my boyfriend named “Stepmother Decor.”

Sleep is a major struggle in many peoples lives, yet so important for mental wellness. As a Non-24, I certainly have laid awake many a night, and with cptsd sleep isn’t always restful.

I imagine them to be both beautiful and a little freaky, but not evil. They allow for contemplation and imagination, so they are not just bad.

The material used is steel wire, and its 120 cm tall and 90 cm wide.”

Unrest is part of Adams’ March 2019 exhibition “Wings”, dealing with mental illness and wellness. You can see the exhibition online here: https://lenaadamsartist.wordpress.com/portfolio/wings/

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