Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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AAHS Talk

Peter Mansbach
June 5, 2018

Definitions

[INTRO SLIDE]

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

We formed our organization to raise awareness of Circadian Rhythm Sleep Disorders, which are not widely known, and to advocate for people with these disorders.

[SLIDE - DSPD AND ASPD CHART]

A normal sleeper sleeps, say, from 11pm to 7 am.

With Delayed Sleep Phase Disorder (DSPD) a person's sleep occurs much later, in this example from 5am to 1 pm. He finds it difficult to impossible to fall asleep until very late at night, and therefore difficult to wake up until very late in the morning or even afternoon.

Advanced Sleep Phase Disorder (ASPD) is the opposite: a person falls asleep too early and wakes up too early.

[SLIDE - NON-24 CHART]

With Non-24-Hour Sleep-Wake Disorder a person falls asleep later and later each day, eventually rotating all the way around the clock. This makes it impossible to work a regular schedule.

[SLIDE - TWO FACTORS]

The part that's so hard for most people to understand is that not only is our clock shifted, but we cannot shift it back. People tell us to just get up at the right time for a few days and you'll be so tired you'll fall asleep when you're supposed to. We do get so tired, yet we cannot fall asleep at the right time.

[SLIDE - INCIDENCE]

Two studies have estimated that about 1 in 600 adults have DSPD. (That's three times as many as have narcolepsy!) And DSPD is much more common in teens, but most outgrow it. ASPD is even more rare. Non-24 occurs in about half of all totally blind people, as is well-known, but it occurs in sighted people as well, we believe more often than has been recognized.

Need to Raise Awareness

[SLIDE - DEFINITIONS]

Far too many people are being treated for depression or ADHD, when the real problem is sleep deprivation due to a circadian disorder.

I have heard so many stories from our members, 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 many are not.

I often hear from people who are trying to hold down a daytime job and only getting 4 or 5 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.

Registry and Survey

[SLIDE - REGISTRY AND SURVEY]

Our major effort the past two years has been to create a patient registry and survey for people with circadian sleep disorders. Our survey includes over 120 questions, and we have over 500 respondents with these disorders who have completed it. This year we are working on analyzing the data and publishing some results.

[SLIDE - SOME SURPRISING RESULTS]

Preliminary results include some surprises: The literature describes these disorders by saying that patients who are allowed to sleep when their body tells them to, sleep well and are alert when awake. That is not what we found. Many of us are still tired, and need a lot of sleep, even when sleeping on our bodies' preferred schedules. There's more going on than just the timing of sleep.

It is widely believed that Non-24 in sighted people is extremely rare. In our survey, 1/3 of sighted respondents believe they have Non-24. But many doctors are not even aware of it. And since those that are believe it is so rare, they rarely diagnose it. So it's self-fulfilling.

Many patients are diagnosed with depression as their primary disorder, and their tiredness is attributed to the depression. Yet for most of them, the depression started well after their sleep problems.

[SLIDE - TREATMENT OUTCOMES]

Three treatments are commonly recommended. Many doctors expect these to work. According to our respondents, they don't work very often, and one is downright dangerous.

[SLIDE - CLOSING SLIDE]

I feel our most urgent task is to spread awareness of these disorders, among the public and especially within the medical community, of how disruptive they can be to people's lives, and how threatening to health, and that they often cannot be brought under control.

Thank you.

© 2018 Circadian Sleep Disorders Network
Last modified Jun 6, 2018
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