Circadian Rhythm Sleep Disorders (CRSDs or CSDs) are neurological disorders in which the sleep-wake cycle is out of sync with the day-night cycle. These include in particular Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder. Also included are Advanced Sleep Phase Disorder, Irregular Sleep Wake Disorder, Shift Work Disorder, and Jet Lag Disorder, which are defined here.
Delayed Sleep Phase Disorder (DSPD), also called Delayed Sleep Phase Syndrome (DSPS), is characterized by an inability to fall asleep until very late at night, with the resulting need to sleep late in the morning or into the afternoon.
Non-24-Hour Sleep-Wake Disorder (Non-24), also called Free-Running Disorder (FRD), is a condition in which a person's day length is significantly longer than 24 hours, so that sleep times get later each day, cycling around the clock in a matter of days or weeks.
We are asking our members and followers to give our brochure, and/or our Q&A booklets, to their sleep doctor and their general doctor on their next visits. It is vital to all of us suffering from circadian disorders that more doctors and their support staff understand these disorders and how disruptive they can be. The more doctors who know about us, the more patients we can reach, inform, and support. And the larger our membership, the more credible our voice on behalf of all people with circadian sleep disorders.
You can print out the brochure on US letter paper (8½x11) or on A4 paper (non--US). Booklets can be printed for DSPS or for Non-24 (the same file can be printed on either US or A4 paper). Alternatively you can email us at to request a printed copy of any or all these documents (please specify which). Be sure to include your name and full postal address. We will send these at no charge to you.
Circadian Sleep Disorders Network submitted comments to the FDA (U.S. Food and Drug Administration) docket (collection of comments) on narcolepsy patient-focused drug development. You can view the comments here.
Seven candidates have been nominated for five open slots. Members who are current on their dues are eligible to vote Dec 1 - 15. Details, and candidate information, is available to members only on our Election page. Results will be announced Dec 16.
Talk to someone about it! Raise awareness! Explain what it is, that it affects sighted as well as blind individuals, how it impacts people's lives, that it is physical and is reflected in people's biomarkers, and that treatment often does not work.
This event was started last year by the Facebook group Non 24-Hour Sleep-Wake Syndrome Support Group. A web page was recently posted at n24day.wordpress.com describing this event and offering to post links or content.
Peter Mansbach, our president, gave a talk on "Circadian Rhythm Sleep Disorders and Narcolepsy" at the Narcolepsy Network Conference in Atlanta on October 19, 2013. The talk introduced DSPS and Non-24, and made some connections with narcolepsy. You can read the prepared text, and view the slides. A video version of the slides with the talk as audio is available on YouTube. The talk was well attended (perhaps 75 people) and well received.article on CSD-N president Peter Mansbach's experiences with DSPS, in anticipation of his talk at the Narcolepsy Network conference Oct 19.
The National Sleep Foundation, in response to our email campaign last spring, has added Delayed Sleep Phase Disorder and Circadian Rhythm Sleep Disorders to their Sleep Disorders drop-down list on their home page. The new entries link to descriptions which I believe were pre-existing, but hard to find. Thank you to all those who emailed, and thank you to NSF. Together we have a voice!
Some background: Recently the National Sleep Foundation (NSF) created a new set of web pages on non-24 with some serious and harmful misinformation. Thanks to our members' emails to them, NSF has changed the most objectionable statement to our satisfaction and added a link to our website. However, they still had not listed DSPD at all.
So we urged our members again to write them. And they did. The NSF has now added DSPD.
Our next campaign will be to get NIH (U.S. National Institutes of Health) to add circadian rhythm disorders to their web pages - after the government reopens, and the folks there have had time to catch up.
Our president, Peter Mansbach, presented some thoughts at the NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board meeting on Sept 23. These included the need for research on a combination treatment of light therapy in the morning plus light restriction in the evening, plus a renewed push to get circadian sleep disorders listed on the NIH web site. The text of the talk, together with a brief summary of other topics discussed, appears here.
A fifth article in a series on DSPS was recently published on salary.com, featuring an interview with CSD-N member Tina Garner on how she has
managed her career as an engineering design drafter. Tina was able to shift her schedule using light therapy. This article is titled
Are Night Owls Lazy Employees?
The previous articles, in reverse chronological order, are
We posted a video re-enactment of part of this year's presentation to the National Institutes of Health by Peter Mansbach, our president, at youtu.be/Wc7AmksLV44. This excerpt lays out two of our concerns regarding current research on treatments for circadian rhythm sleep disorders. The full text is available at www.circadiansleepdisorders.org/docs/NIH-13-02-25.php.
A video re-enactment of last year's presentation is still available at
That presentation introduced CSD-N and our mission to NIH.
Dr Robert Thomas, in a summary of the recent SLEEP 2013 conference, reported that "Circadian biology [was the] best part of the meeting. Dysregulated internal timing is a terrible thing - most organ systems are impaired - metabolism, cognition, mood, cancer risk possibly, vascular function.... Melatonin testing in saliva and/or urine is now strongly recommended (but not covered by insurance...)."
Dr Thomas, a sleep medicine physician, is a member of our Medical Advisory Board. The SLEEP conference is the annual conference of the AASM (American Academy of Sleep Medicine) and the SRS (Sleep Research Society), and showcases recent research papers.
At our urging, NORD, the National Organization of Rare Diseases (www.rarediseases.org) has added Non-24-Hour Sleep-Wake Disorder to their list of rare diseases. Special thanks to James Fadden, our vice president, who wrote up an excellent description of the disorder, supported by references to the research literature; and to Dr Katherine Sharkey, on our medical advisory board, who edited it and supported our application. The writeup can be viewed at www.rarediseases.org/rare-disease-information/rare-diseases/byID/1275/viewAbstract. You need to sign up at NORD [free] to see the full text.
You can help: email other websites with a request to link to Circadian Sleep Disorders Network at www.circadiansleepdisorders.org. Please use this primary address when suggesting links, not the shortcut.
Circadian Sleep Disorders Network has formally affiliated with the Niteowl Email List. What does this mean? CSD-N grew out of this list - the founders of CSD-N "met" on this list, many of our members participate, and we share the same goals. We are also available to assist the list administrator if needed. Nothing about the list's operation will change.
Our brochure is geared to the general public, to introduce DSPS and Non-24 to people experiencing symptoms of these disorders, and to their families.
Please distribute it to anyone who may be interested.
Print on lightly colored paper for some color, if you like. We used ivory.
|Brochure - web display||
Print on US letter size paper, PDF
Print on A4 size paper, PDF
The web display version shows the brochure panels in easy-to-read order. The print versions are meant to be printed out on both sides of a sheet of paper, then folded in thirds, creating a brochure. (In the print version, the panels will appear out of order on-screen.)
We have posted documents describing DSPS and Non-24, in an easy to read Question-and-Answer format. These are designed to give to family members, friends, employers, and school personnel, to help them understand these disorders. Feel free to print and distribute these. There are two different (but similar) versions:
|DSPS Q&A - web||printer||booklet*|
|Non-24 Q&A - web||printer||booklet*|
The web formats display nicely in your browser.
The printer versions are formatted by your browser for printing a multi-page document.
The booklet forms are pre-formatted PDF files that you can print on two sides of a single sheet of paper, which then folds in half into a booklet.
* When printing the booklet, be sure to flip on the short edge (select this option if you have a double-sided printer).
We also have a one page Fact Sheet that introduces DSPS and Non-24 to people who don't know about them. It's a quick and easy read, just the basics.
We are offering merchandise (mugs, T-shirts, tote bags, bumper stickers, and a messenger bag) with our name and logo through CafePress,
www.cafepress.com/circadiansleepdisordersnetwork. (Note: if you just search CafePress you will find this merchandise, but at a higher price!)
Circadian Sleep Disorders Network is a Coalition Partner of Start School Later. We understand only too well the difficulties many teens have with early school start time, and we support the move to start school later.
We're still getting started!
This web site is intended to provide generic information about CSDs, and
is not intended to replace discussions with a healthcare provider.
You should not use the information on this website for diagnosing or treating a medical or health condition.
All decisions regarding patient care should be made with your healthcare provider.
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