[Blindtlk] Non-24 sleep disorder and Vander Pharmaceutical's advertisements

Mon Jan 11 15:49:59 UTC 2016

Hi all,
This really is about our objections to the marketing advertisements.
A line from one ad playing on my local radio station says this.
"It's a struggle just to get through the day."
Now, let's say that I was a fairly progressive employer and I was willing to 
interview a blind person and see if they should get the job I was offering 
on their merits. If I had heard a nonstop month-long ad campaign for this 
drug that helps the blind who suffer with this sleep disorder that makes it 
"A struggle just to get through the day", how can anyone say that this 
information on the ads, purportedly given by a real blind person, would not 
influence my choice of a new employee.
Blind or sighted, I want an upbeat, energetic person working for me; someone 
who is giving me a fair day's work for a fair day's pay. How can someone who 
finds it "a struggle to just get through the day" be that employee for me. 
How can I believe that they will be doing a good job when, so I'm told, they 
are expending all of their physical and emotional resources just "struggling 
to get through the day". I'm sorry, but you won't convince me that this 
marketing is not harmful to the public image of blind people.

We've heard several reports of folks on the list knowing blind folks who 
have this sleep disorder and how they've been helped by this medication. 
Would it not be more effective marketing to have some real blind people tell 
their stories about how they used to have to use all sorts of creative ways 
to ensure that their sleep disorder didn't interfere with their professional 
life but now, since this new drug came along it's simplified everything? I 
believe that this approach would be much more positive, given that it 
depicted folks coping successfully with a difficult condition, but it would 
also highlight how much the use of the drug had improved things.
I would also like to point out two factors which have not been raised in 
relation to the sleep study data which I read.

The first is impact of seasons. I have not seen any data which reported 
whether there was a difference in the effect of the disorder between summer, 
with long bright days, and winter, with short often dull days. on those who 
have it. The use of the special sun lamps which help those who suffer with 
Seasonal Affective Disorder should have been ruled out as a possible 
solution to this disorder.

Secondly, I have seen no data which looked at the effects of a good daily 
exercise programme on the ability of those with non-24 to sleep better. Many 
studies on other topics have shown a marked effect of regular meals, at the 
same time of the day, and of a strenuous daily exercise programme in making 
folks sleep better. Now, I'm not saying that non-24 isn't real or that diet 
and exercise will fix it. I'm just saying that I haven't seen any data to 
say that, when diet and exercise were used as an intervention, they did not 
improve matters. These lifestyle variables should have been studied and 
ruled out as ineffective as part of Vander's verification of the need for 
their drug.
Just my thoughts.
Warmly,
Heather

-----Original Message----- 
From: Cindy Ray via blindtlk
Sent: Monday, January 11, 2016 8:53 AM
To: 'Kathy Ungaro' ; 'Blind Talk Mailing List'
Cc: Cindy Ray
Subject: Re: [Blindtlk] blindtlk Digest, Vol 115, Issue 5

OK, I get all this, but when you have marketing that suggests we don't know 
it is day or night, that is ludicrous. A kid actually told my kid once she 
didn't have to go indoors because I didn't know the difference between dark 
and light. Maybe I couldn't see light, but I know the difference. So 
commercials are aired like that, and people don't hear/see the part about 
the ailment; they feel sorry for us because we don't know the difference 
between day and night. That does legitimize the concerns of the folks here 
who believe that it can affect employers' willingness to give blind people a 
try. If I don't know the difference between day and night, I might get 
confused as to when to show up for work. Trust me, this could happen.
Cindy

-----Original Message-----
From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Kathy 
Ungaro via blindtlk
Sent: Monday, January 11, 2016 8:38 AM
To: blindtlk at nfbnet.org
Cc: Kathy Ungaro <icbv at sbcglobal.net>
Subject: Re: [Blindtlk] blindtlk Digest, Vol 115, Issue 5

I have been reading all of the comments on Non 24 and as a sighted person 
that works with blind individuals, I wanted to share with you that I 
personally believe this condition is very real.  I've worked with one 
individual in particular that I 100% believe has this.  It's not a bash on 
blind people not knowing when it's day time or night time. It has nothing to 
do with that.  Read the information from their website to learn more about 
it (which I have no connection to). What I have witnessed is when an 
individual has this they go through periods of perfectly fine sleep, but 
then over time their 'master body clock' gets out of sync, then they have a 
period of a week or two that they are just exhausted and need to sleep 
during the day, yet at night they are wide awake. Then the clock goes back 
to normal and sleep is fine for a while again.
The biggest problem my friend has had with this is finding a doctor to learn 
about this and understand the problem.
I hope this information is helpful.
Non-24 is a circadian rhythm disorder
•Do you have a hard time sleeping through the night?
•Do you find you have a strong urge to nap during the day?
•Is it hard for you to concentrate?
•Are you feeling restless, overtired, or frustrated?
•Do you feel your sleep patterns are different from those around you?
•Does it seem like you're the only person who's experiencing these things?
If your answer to any of these questions is yes and you're totally blind, 
you may have Non-24-Hour Sleep-Wake Disorder (Non-24).
Non-24 is a circadian rhythm disorder. Your circadian rhythms are controlled 
by your master body clock and tell you when to sleep, when to wake, when to 
eat, among other things.
In most people, the master body clock runs slightly longer than 24 hours. 
What this means is that rather than cycle on a 24-hour day, most people's 
natural rhythms actually cycle a bit longer. Whether the cycle runs two 
minutes or 30 minutes longer, if you have Non-24 these minutes add up day 
after day, a few one day adding to a few more the next, eventually causing a 
noticeable change in the times during the day when your body expects to 
sleep and expects to be awake.
Though Non-24 may appear to be a sleep disorder, it isn't. It's actually a 
serious, chronic circadian rhythm disorder very common in people who are 
totally blind, and it can arise at any age. Currently, there are 1.3 million 
people who are legally blind in the United States. Of the legally blind, 
130,000 have no light perception (i.e., totally blind), and as many as 70% 
suffer from Non-24.
Difficulty at night and challenges during the day
Non-24 brings about two significant symptoms.
First is a profound inability to sleep or to stay asleep at night, and the 
second is an overwhelming urge to sleep during the day. Both changes are 
caused by the timing of the release of the hormones, melatonin and cortisol. 
Melatonin controls sleep, and cortisol controls when to wake up and when to 
eat. Cortisol also controls your metabolism, cardiovascular function, immune 
system, and appetite. Because the release of melatonin and cortisol shifts 
continually, not all nights are the same. Some are sleepless, others are 
normal, and poor sleep happens only when the master body clock is out of 
sync with the typical day-night cycle. And when poor sleep happens, sleep 
deprivation may make it difficult to focus on the task at hand.
Non-24 comes about when the master body clock runs on its own natural 
rhythm. Hence the name, Non-24, which indicates a master body clock that is 
not 24 hours long. For unknown reasons, most people's body clock runs a 
little longer than 24 hours, which means most people could have Non-24 to 
some degree. The difference is that for sighted people, environmental light 
cues signal the brain to reset the master body clock every day to 24 hours.
For people who are totally blind, the master body clock runs its natural 
course. This means that if your body clock runs on a 24.5-hour schedule, 
today you're 30 minutes behind and tomorrow your body clock will be an hour 
behind. The next day will be 90 minutes, and so on. Day by day, this time 
adds up until you're many hours behind, creating a rhythm that's out of sync 
with the typical day-night cycle. Eventually, your body operates as if night 
is day and day is night. While you could try to maintain your usual 
schedule, more often than not you have a hard time sleeping at night and 
then feel an overwhelming urge to sleep during the day. In time, you once 
again reach the point when your body clock is in sync with the typical 
day-night cycle. But then, just as quickly, it moves out of sync again.
A complication that can sap your energyBecause its effects are so 
wide-ranging, Non-24 may hinder the methods you use to get through the day. 
It may sap your energy. You may suddenly fall asleep at inopportune times, 
and it may make crucial daily tasks a challenge, such as counting bus stops 
so you know when to get off.
Living with Non-24 may make you feel as though no one understands what 
you're going through, and this sense of being alone only makes the effects 
feel that much worse. The truth is, you're not alone. There are many other 
people living with Non-24 who are experiencing many of the same challenges 
you do. Using the information on this website, as well as talking to others, 
may help guide you as you manage Non-24 in your own life.
Step 1 on your road to the help you need? Read the next section of this 
website to get a better understanding of the master body clock and circadian 
rhythms and how they may be affecting your life.
Here is the link to the website: http://www.non-24.com/about-non-24.php
Thank you,Kathy UngaroICBV, Business Manager(630)234-4444 Illinois Committee 
of Blind Vendors53 W. Jackson Blvd. Suite 502Chicago, IL 60604(312)663-3007 
This message (including attachments) is privileged and confidential. If you 
are not the intended recipient, please delete it without further 
distribution and reply to the sender that you have received the message in 
error.

      From: "blindtlk-request at nfbnet.org" <blindtlk-request at nfbnet.org>
To: blindtlk at nfbnet.org
Sent: Wednesday, January 6, 2016 6:00 AM
Subject: blindtlk Digest, Vol 115, Issue 5

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Today's Topics:

  1. Re: back fromvacation (Ericka)
  2. Re: non 24 (Ericka)
  3. Re: non 24 (Kevin)
  4. Re: non 24 (Ericka)
  5. Re: non 24 (justin williams)
  6. Re: non 24 (Cindy Ray)
  7. Re: non 24 (Gary Wunder)
  8. Re: non 24 (Arielle Silverman)
  9. Re: non 24 (Bryan Schulz)
  10. Re: non 24 (Ericka)
  11. Re: non 24 (Ericka)
  12. Re: non 24 (Judy Jones)
  13. Re: non 24 (Ericka)
  14. Re: non 24 (Judy Jones)
  15. Re: non 24 (Judy Jones)
  16. Re: non 24 (Ericka)
  17. Re: non 24 (Mark Tardif)
  18. Re: non 24 (Mark Tardif)
  19. Re: non 24 (Cindy Ray)
  20. Re: non 24 (Arielle Silverman)
  21. Re: non 24 (Bryan Schulz)
  22. Re: non 24 (Carly Mihalakis)
  23. Re: non 24 (Carly Mihalakis)
  24. Re: non 24 (Carly Mihalakis)
  25. Re: non 24 (Carly Mihalakis)

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