Elections for the Board of Directors of Circadian Sleep Disorders Network have concluded (Dec 2014). Two current board members, James Fadden and Andrew Wall, were re-elected. Two new board members, Kasha Oelke and Jennifer Silvia, have also been elected. All are for two-year terms. Welcome to the new members!
In September Circadian Sleep Disorders Network contacted the AASM (American Academy of Sleep Medicine) urging them to add Circadian Rhythm Sleep Disorders to their Sleep Education website. They replied that they were updating their website, and would consider our request. They have now added several pages on Circadian Rhythm Sleep-Wake Disorders.
This is important for us in our mission to raise awareness of CRSDs. The AASM is the pre-eminent sleep organization in the U.S., and is charged with accreditation of sleep labs. They also publish important review articles for sleep doctors, for example Circadian Rhythm Sleep Disorders: Part II, Advanced Sleep Phase Disorder, Delayed Sleep Phase Disorder, Free-Running Disorder, and Irregular Sleep-Wake Rhythm (2007). So this addition certainly helps our credibility. Thank you, AASM.
Non-24-Hour Sleep-Wake Disorder is a serious disorder of the body's circadian system, in which a person's clock runs (generally) much longer than 24 hours and they are unable to entrain to a 24-hour daily cycle. Instead, their sleep time progresses later and later each day, going all the way around the clock. It is also called Free Running Disorder. Without proper treatment the person is unable to meet regular daily commitments and so, without suitable accommodations, unable to hold a normal job, so this is a real disability. And in some people the current treatment are ineffective.
Non-24 is more widely known in blind people, but the disorder occurs in sighted people as well. While the symptoms are similar, the causes are likely quite different. We know what causes Non-24 in blind people: lack of response to light. People's body clocks do not run at exactly 24 hours. On average, they run about 10 minutes longer than that, but exact timing varies among individuals. The body syncs its clock to the 24 hour day-night cycle through light entering the eyes. In blind subjects, this synchronizing often does not occur.
Several different causes have been proposed for Non-24 in sighted people. These may include long intrinsic circadian period, lack of sensitivity to light, over-sensitivity to light, deficiencies in the ipRGC cells of the retina, lack of melatonin production, long elimination time of melatonin, differences in timing of sleep relative to internal circadian rhythms, differences in tolerance to phase mismatch, and possibly others. Or a combination of these factors.
Reflections from our vice-president, James Fadden, on N24 day 2014 and the myths and realities of N24 may be found in his article N24 Awareness Day 2014: Myths and Reality.
Please help us raise awareness of this difficult and disruptive disorder, affecting both blind and sighted people. Take the time to explain that it is not just about being "a little tired", as some detractors have said. It is about barely functioning, and being unable to meet the demands of a normal schedule.
SleepyHead Central, a sleep information website, has declared November to be "Circadian Rhythms Month". They have published several blog entries during the month relating to circadian rhythms, under a Shed Some Light logo.
In a guest post our president, Peter Mansbach, sheds light on some misconceptions about Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder.
In another guest post, Terra Ziporyn Snider, president of Start School Later, presented a really good summary of the issues in needing to start schools later. Circadian Sleep Disorders Network is a coalition partner with Start School Later.
We thank SleepyHead Central for helping raise awareness of these disorders.
"Do you rise when the world does? or does your body tell you something else. Talk to a sleep specialist for answers." This quote, at the end of Honda's narcolepsy public service announcement, https://www.youtube.com/watch?v=Us6vlX3HY2E, is general enough to help other sleep disorders such as Circadian Rhythm Sleep Disorders.
One of our members wrote an article about her experiences with DSPS that was recently republished in the Fall, 2014 issue of Abilities, a magazine for people with disabilities published by the Canadian Abilities Foundation. You can view this issue online at http://www.bluetoad.com/publication/?i=228257. Click on the cover text "Sleep Troubles: We're Not Lazy, We're Niteowls" at bottom right. Our member's contribution, in pink, starts at the bottom of the second page of the article (page 26 of the magazine) and continues on the next two pages. They end with a link to the Niteowl email list which doesn't work online, but they have promised to fix that. They've added a link to CSD-N at the end of the online article.
The original article was published several years ago in Daily Kos at http://www.dailykos.com/story/2007/08/26/376330/-A-Little-Bit-Special-DSPS-a-sleep-disorder using the pseudonym DSPS owl. It is also republished on our website at http://www.circadiansleepdisorders.org/info/BDKarticle.php.
We also just noticed that our president, Peter Mansbach, had his experiences with DSPS republished on Paradise Sleep at http://paradisesleep.com/circadian-sleep-disorders/. That story starts several paragraphs down, after the link to Circadian Sleep Disorders Network.
The FDA has updated its press release regarding its approval of Hetlioz (tasimelteon) by removing the "blind" qualification. It's now approved for non-24 in general. That should make it easier when dealing with insurance. Here's the FDA Prescribing Information. We assume it could be used off-label for DSPS as well.
See also previously posted announcement. We note that the approval did not restrict it to blind people, although the original press release incorrectly said it did.
The Board of Directors is pleased to welcome Edward Grandi as its newest member. Ed was appointed by vote of the board to fill a recent vacancy as provided in the bylaws. Ed is a past Executive Director of the American Sleep Apnea Association, and his experience in running a sleep non-profit should prove valuable to us as we chart our future course.
To assist members of the public to better understand the U.S. Social Security Disability process, the Social Security Administration has created a helpful YouTube video series at https://www.youtube.com/playlist?list=PLGSYaZN04xzFCoEqDlY3n7xgWLh55vvDh
We have upgraded our website to be more mobile-friendly. There are still some minor glitches being sorted out. Do let us know of any problems, and if you do, on which device you observed it, and please copy and send us the test line in green at the bottom of this page.
Join the Invisible Disabilities Association in celebrating Invisible Disabilities Week, Oct 19-26, 2014. As we know, if you're missing a leg people are quick to offer help, but if you struggle with a sleep disorder, not so much. It's invisible, and often not even believed.
CSD-N joins in celebrating Idiopathic Hypersomnia Awareness Week, Sept 8-14. Kasha Oelke, who maintains CSD-N's Twitter presence, has created a new website focusing on Hypersomnia, with information on circadian disorders as well. Check it out at www.hypersomnia.info/.
It seems that many people suffering from circadian disorders are still tired even when they sleep on their body's preferred schedule. And many people with hypersomnia or narcolepsy as the primary diagnosis nevertheless stay up late and have difficulty getting up in the morning, suggesting DSPD. It may well be that people's various internal clocks are not all in sync, and that can account for some symptoms. On this site we focus a lot on the timing (phase) of circadian rhythms, but not a lot on the amplitude. A lesser amplitude, whether in melatonin secretion, core body temperature, cortisol level, etc could also be related to daytime tiredness. There's a lot we still don't understand about circadian rhythms, and about sleep itself.
James Fadden, our vice president, spoke via telephone to a group of blind children and their parents. CSD-N had recently received a request from the Lighthouse Guild International (www.lighthouse.org/) an organization for blind persons and their families. They run a telephone support group for the parents of blind and visually impaired children. They asked if we had someone who could speak to their group about Non-24-Hour Sleep-Wake Disorder in blind children.
James volunteered. He has Non-24 (although he is sighted), and spoke to the group for over 2 hours on Wednesday evening. He spoke about the biology of N24, the symptoms, and treatments, with particular emphasis on melatonin and melatonin analogs. There was a lot of discussion and questions. Some of the children were totally blind and others were visually impaired. Many also had other conditions often related to circadian disorders such as autism. Several did have Non-24 and others had other sleep and circadian problems.
The psychologist who runs the group emailed afterwards to express how pleased they were with the presentation.
Fellow sufferer Annechien Foeth started a Dutch Facebook group for DSPS, DSPS, the Dutch division. She hopes to translate some of our materials into Dutch.talk on Circadian Rhythm Sleep Disorders at the ASBA (American Sleep and Breathing Academy) Sleep & Wellness conference in Scottsdale, AZ, on May 3. The talk was targeted for an audience of sleep technologists, nurse practitioners, and other medical personnel in hopes of raising awareness of Circadian Rhythm Sleep Disorders, their diagnosis and treatment.
The talk (audio with slides) is available on YouTube at www.youtube.com/watch?v=MgOcMh8g3Ps. The text is posted at www.circadiansleepdisorders.org/docs/talks/ASBAconf.pdf, and the slides at www.circadiansleepdisorders.org/docs/talks/ASBAconfSlides.pdf.
ASBA (as the name suggests) is primarily focused on sleep apnea. But they have a general mission to promote wellness, and are receptive to learning about other sleep disorders
Circadian Sleep Disorders Network now accepts Bitcoin for dues payments and contributions! Your payment will be converted to dollars the day you make it, and deposited to our bank account. See our Join page for more details. Of course you can still pay by check or via PayPal, same as before.
Circadian Sleep Disorders Network has begun posting on Twitter! @CSD_N. You can visit us at twitter.com/CSD_N (yeah, they don't allow hyphens in the name, so we used an underscore). Please follow us. Thanks to sleep activist Kasha Oelke for volunteering to maintain this account and to keep tweeting on our behalf.
Circadian Sleep Disorders Network is pleased to welcome Dr Charmane I Eastman, at Rush University Medical College, to our Medical Advisory Board. Dr Eastman has done research on the Phase Response Curve, and has provided us with valuable advice on that subject, and we are happy she has agreed to join us.
"If sleep does not serve an absolutely vital function, then it is the biggest mistake the evolutionary process has ever made"
We've posted the full presentation on YouTube at youtu.be/21UdTspJyvg. You can also download it from www.circadiansleepdisorders.org/docs/talks/ASBAwebinar.wmv (it's a big file, about 200MB, in .wmv format), and play it on your computer. The text and slides are also posted separately, at www.circadiansleepdisorders.org/docs/talks/ASBAwebinar.pdf (text as a PDF file) and www.circadiansleepdisorders.org/docs/talks/ASBAwebinarSlides.pdf (slides, PDF, 3 MB). And feel free to pass these on to others - we're in the business of raising awareness, after all.
The webinar, by Peter Mansbach (CSD-N president) on Circadian Rhythm Sleep Disorders was broadcast by ASBA (American Sleep and Breathing Academy) on Wednesday, March 19, from 11:30 am - 12:30 pm MDT (Mountain Daylight Time). The talk was targeted for an expected audience of sleep technologists, nurse practitioners, and other medical personnel in hopes of raising awareness of Circadian Rhythm Sleep Disorders, their diagnosis and treatment.
Circadian Sleep Disorders Network has added its name to the list of organizations supporting the NORD (National Organization of Rare Diseases) position, which opposes the proposed repeal of the orphan drug tax credit. Individuals who wish to support NORD's position may do so here.
Peter Mansbach (CSD-N president - photo at right) attended NORD's Congressional Briefing on this matter on Mar 20, to show support on this issue to the Senate staff members who attended (from the staff of Sen Barrasso and Sen Brown). There were several speakers, including members of the patient community who told their stories.
On January 31, 2014, the FDA approved Hetlioz (tasimelteon) for treatment of non-24: www.hetlioz.com (Vanda Pharmaceuticals). It is now available in the U.S. by prescription. We assume it can be used off-label for sighted non-24 people, and possibly even for DSPS. It is supposed to work similarly to melatonin. Note: Circadian Sleep Disorders Network is not in any way affiliated with Vanda Pharmaceuticals.
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 firstname.lastname@example.org, and please copy CSD-N at email@example.com, 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 [see below] 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.
Note: James again became available later in the year, and was reappointed to the board by board vote, in accordance with the bylaws.