Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Introduction to Circadian Sleep Disorders Network
presented to the
NIH Sleep Disorders Research Advisory Board
May 30, 2012

by Peter Mansbach

Hi. I'm Peter Mansbach, and I'm President of Circadian Sleep Disorders Network.

Last year several people with circadian rhythm sleep disorders spoke here, and mentioned our "listserv" (online discussion group) with several hundred participants. Several of us felt we needed an organization, to promote awareness and accommodation for these disorders. We have now formed such an organization, Circadian Sleep Disorders Network. We've incorporated, formed a Board of Directors, and received our 501(c)(3) designation. We have a website that you can reach at csd-n.org. We opened for membership in January, and are in the process of forming a Medical Advisory Board, with Dr Czeisler as its first member.

Based on research surveys, we estimate 3 of every 2000 people suffers from DSPS. That's about half a million Americans! In addition, it has been estimated that 75,000 Americans suffer from Non-24-hour Sleep-Wake Disorder. Mostly blind folks, but it does include a number of sighted individuals as well - I've counted over 35 on our listserv.

I have heard so many stories from people on the listserv, of doctors who don't believe in these disorders, and even sleep specialists who insist that, if only the patient did what he prescribed, he would be able to live on a normal schedule. Some people are helped by treatment, including light and melatonin, but some are not. I feel our most urgent task is to spread awareness, among the public and especially within the medical community, of these disorders, of how disruptive they can be to people's lives, and how threatening to health, and that they cannot always be brought under control.

Far too many people are being treated for depression or ADHD, when the real problem is sleep deprivation due to a circadian disorder. And they are often prescribed medications based on these diagnoses, that may have their own side effects, but that don't work since they aren't addressing the underlying circadian disorder.

I keep reading emails on our listserv from people who are trying to hold down a daytime job and only getting 3 or 4 hours of sleep a night. These people are destroying their health. Some have already been diagnosed with diabetes or other serious, long-term health problems.

Worse yet, they do not get support from their physicians. They are told they are lazy, they are told they are not following the prescribed regimen strictly enough, they are told they could hold a daytime job if only they pushed themselves harder. But they *are* pushing themselves. Into the ground.

I read emails from people who have found a career that allows working at night, only to learn that the training they need to get certified can only happen in the morning, or to find that employers, while desperate for people who can work at night, nevertheless require everyone to work day shifts part of the time.

I recently visited a local sleep lab, to introduce our organization, and spoke with a technician. She knew of circadian sleep disorders, but said very frankly that she was not concerned with them, but only with sleep apnea. If there was a different problem, it was up to the sleep doctor to determine that. When I had my last sleep study the technicians insisted I go to bed at midnight, and woke me at 5 am. The sleep doctor then said my problem was that I wasn't getting any stage 4 sleep. No, not between midnight and 5 am. I could have told her that.

We are heartened by the emphasis this committee has placed on circadian research. We are hopeful that NIH sponsored research and outreach will raise awareness of circadian issues, and will lead to a better understanding of treatments, and in particular why treatments work for some but not for others.

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