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.
Peter Mansbach (CSD-N president) will be giving a webinar on Circadian Rhythm Sleep Disorders at ASBA (American Sleep and Breathing Academy) on Wednesday, March 19, from 11:30 am - 12:30 pm MDT (Mountain Daylight Time - note time zone).
Registration is free for anyone interested, but you do have to register in advance (and apparently select one of the types of continuing education credit). You do not need to join. Further description and registration are at https://www4.gotomeeting.com/register/285307895.
On January 31, 2014, the FDA approved Hetlioz (tasimelteon) for treatment of non-24 in the blind. Should be available in the spring. I assume it can be used off-label for sighted non-24 people, and possibly even for DSPS. www.hetlioz.com (Vanda Pharmaceuticals). It is supposed to work similarly to melatonin.
NIH has not included DSPD or Non-24 on their website!
The U.S. National Institutes of Health (NIH) has a number of web pages which talk about sleep disorders. In all these pages we see sleep apnea, narcolepsy, and restless legs; but we do not see any Circadian Rhythm Sleep Disorders - no Delayed Sleep Phase Disorder, no Non-24-Hour Sleep-Wake Disorder. It's no wonder people haven't heard of these disorders, and many doctors still don't recognize how serious they are....
Instructions and sample email are at www.circadiansleepdisorders.org/docs/campaigns/NIHWeb.php . Send email to email@example.com, and please copy CSD-N at firstname.lastname@example.org, so we can follow up, possibly including contacting higher ups.
I received this email from the NIH NHLBI Health Information Center in response to the above campaign. It represents good progress. Dr Twery took action in response to our emails by raising the issue with the Information Center. He passed the emails on to them, and they are aware of our issues. He did advise me that it's a slow process, and will take a long time. In my opinion, it would still help if more people wrote to him, since we are competing for very limited funds. Together we have a voice! Thank you.
Newly elected Board members Asli Kumcu and Andrew Wall joined the CSD-N Board of Directors on Jan 15, 2014. The Board has re-elected Peter Mansbach as president and Beth Macdonald as secretary. Andrew Wall has been elected treasurer. James Fadden remains as interim vice president, until the Board selects a new VP.
Two members are also leaving the Board: James Fadden and Susan Plawsky. We want to thank them for their service. James was a Founding Member, and without his help and encouragement we would not be where we are today. He also wrote the scholarly article on Non-24 that we submitted to NORD and they posted. Susan has been a very responsive Board member, and has helped immeasurably with editing and other advice whenever requested. Both of them will be missed.
The first time you go to smile.amazon.com you will be asked to select a charity. Please enter
Circadian Sleep Disorders Network. Amazon will remeber your selection. But you do have to go to
smile.amazon.com instead of simply amazon.com, for each purchase, if you want 0.5% of that purchase to go to CSD-N. Note that you pay the same amount either way - through Smile the 0.5% goes to us, otherwise it goes to Amazon.
Amazon and the Amazon logo and AmazonSmile and the AmazonSmile logo are trademarks of Amazon.com, Inc. or its affiliates.
Our DSPS Question and Answer document is now available in German, too. Thanks to member Homo Sapiens Asynchronous [a pseudonym] for doing the translation!
If any of you has the linguistic expertise to translate our other documents or web pages into German or any other language, please do so. It can help raise awareness in non-English-speaking countries, and provide material for people with circadian rhythm sleep disorders to pass on to their doctors, family, and employers. Send submissions to .
Darren Hill, Beth Macdonald, and Peter Mansbach were re-elected to two year terms. Asli Kumcu was newly elected to a two year term, and Andrew Wall was newly elected to a one year term. Welcome to the new Board members, and thanks to all who ran.
Background: seven candidates were nominated for five open slots. Members who were current on their dues on Nov 30 were eligible to vote Dec 1 - 15. Details, and candidate information, is available to members only on our Election page. Members can see the detailed results by following the link in the email they received allowing them to vote. It's the same link used to vote during the voting period.
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.
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.
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.
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.Archived News 2013
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.
Once you've signed up for the list, you can also browse previous posts at
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).
|German||DSPS F&A - web||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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