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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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.

The post The Struggle of Explaining Non-24 & How We Simplify It For You appeared first on Sighted Non-24.

“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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