Monthly Archives: November 2013

Susan Plawsky

Susan Plawsky wrote an excellent post for N24 Awareness Day. This is a mirror of what she wrote on her private Facebook page:

Spreading awareness of N24 (non-24-hour sleep-wake disorder) in solidarity with friends who have this devastating, disabling neurological disorder.

In essence, their body runs on a longer-than-24-hour clock.

It’s like living on non-Earth time. Or like waking up in a new time zone every day.

Hard to imagine; harder to live with.

For ex, today the sufferer might wake up at 8 AM, tomorrow at 9:30 AM, next week at 8 *PM*.

Formal education, employment, relationships, parenting? Challenging, if not impossible.

Making matters worse, the sufferer’s body systems (sleep/wake, digestion, alertness) may be out of sync with each other, so he/she feels chronically awful and exhausted.

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Delayed2Sleep

This is a mirror of what Delayed2Sleep wrote on their private Facebook page today:

This is my “status” on Facebook today:

Today, November 24, is N24 AWARENESS DAY 2013. N24, short for Non-24-Hour Sleep-Wake Disorder, is, among sighted people, the most debilitating of the circadian rhythm disorders. (Among the blind it has a different cause and is most often treatable.) I have “only” its little brother, DSPS/DSPD, which gives me just an inkling of how N24 is. What we have in common is fatigue and the fact that our sleep patterns are abnormal and inflexible.

People with N24 cannot keep to the 24-hour day on this planet. While normal people usually are awake for about 16 hours and sleep for about 8 hours, N24 people are awake for about 17 hours and sleep for about 9 hours (plus/minus) for a “day” much longer than 24 hours. That means that if they woke up at 8 a.m. today, they’ll awaken at 10 tomorrow, noon the day after, 2 p.m. the day after that and so on around the clock. This makes them have great difficulty getting an education; it generally makes them unemployable; and it makes it nearly impossible for them to make and keep any appointment.

Today is AWARENESS day. Please don’t judge people who have invisible disabilities; they have enough to struggle with as it is. Thanks!

James Fadden

James Fadden, aka, LivingwithN24, has written a post discussing the latest advances in N24-related scientific research to celebrate N24 Awareness Day.

excerpt:

“These results suggest that a longer-than-average intrinsic period is a component of N24, but it is not the only causative factor. Other factors, such differences in phase angle between sleep and temperature rhythms, as found in several studies, may play a role.”

Read the entire entry:

N24 Awareness Day

Sparrow Rose Jones

Sparrow Rose Jones has written about N24 on her autism advocacy page, Unstrange Mind.

excerpt:

“If someone is having a hard time sleeping or waking up, don’t blame them or shame them by calling them lazy. It is the illusion of laziness because your body controls sleep and waking without your having to think about it or pay attention to it at all. So if you don’t have sleep problems, it’s easy to assume it’s because you’re self-disciplined and someone else is lazy.”

Read the entire entry:

N24 Awareness Day

Madelyn Griffith-Haynie

You must go see the terrific N24 Awareness Day page on ADD and-so-much-more today:

excerpt:

“Except for the handful of sleep specialists, MOST doctors (and shamefully fewer Coaches, given my position as a pioneer in the coaching industry and the length of time I have been sounding the alarm) are even aware of the existence of this category of sleep disorders.”

Read the entire entry:

November 24 is N-24 Awareness Day

N24 Awareness Day

N24 Awareness Day, first proposed by Robin Stewart in 2012 and eagerly developed further by the Facebook N24 community, occurs annually on N24 (November 24th) in order to help raise awareness of the condition N24 (Non-24-Hour Sleep-Wake Syndrome), also known as hypernychthemeral syndrome or free-running sleep disorder.

Although the word “sleep” is in the name of this condition, it affects far more than the sleep cycle, having verified effects on metabolism and many other potential links with other health conditions. It is a severe, rare, chronic and disabling neurological disorder that causes the individual’s “brain clock” to be unable to stay in sync with “nature’s clock,” the 24-hour cycle of light and dark on our planet.

As a result of this disconnect between brain and sun, people with N24 struggle to live in a 24-hour world with a non-24-hour brain. This can cause a wide range of difficulties, including problems with employment, school, family life, and social life, among others. N24 appears to have a genetic component and currently is incurable although it can be managed with some degree of success by using light and dark therapy (in sighted people) and/or melatonin therapy (most effective with totally blind people.)

Roughly 50% of totally blind people have some degree of N24 while sighted N24 is much more rare. The mechanisms, treatments, and manifestations of N24 are typically very different in blind sufferers than in sighted sufferers, leading some with N24 to consider blind and sighted N24 as two distinct but related conditions.

On N24 day, people with N24 are encouraged to write about living with N24 or create other forms of art and communication (videos, paintings, music, audio recordings, etc.) about the lived experience of N24. These can take the form of personal stories, scientific essays, awareness essays, poetry and other symbolic expressions and more.

To share your work with others through this site, contact us at N24awareness@gmail.com

We would be happy to link to your work, mirror your work, or host your work – let us know which you prefer.

This awareness hub is not owned or operated by any organization or entity and does not represent or endorse any group or power. It is a resource by and for all individual people with N24. Together, our voice can be powerful.