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

Tue Jan 12 01:08:13 UTC 2016

Hi. I understand what you're saying, but how would this medication 
benefit others who aren't blind? I don't really understand how a sighted 
person could have Non-24 when it seems to be caused by not seeing light, 
which helps regulate the body clock.

On 1/11/2016 6:57 PM, Arielle Silverman via blindtlk wrote:
> Agreed. I'm sure that for affected individuals, getting through the
> day really is a struggle-and it can be a struggle for families with
> affected babies and toddlers too (though I'm not sure if the treatment
> would be safe for them). But, not all blind people have non-24, and
> not all people with non-24 or related issues are blind. The
> commercials by their nature tend to over-simplify the connection
> between blindness and the disorder. More generally, this is why I get
> annoyed when an innovation that would benefit all of society is
> marketed intensely toward blind people with the focus on why blind
> people in particular need the help instead of focusing on the wider
> benefits of the new product.
> Arielle
>
> On 1/11/16, Larry Wayland via blindtlk <blindtlk at nfbnet.org> wrote:
>> I think there are some good points being made here, but one thing I would
>> like to say is I am sure the problem exists, because ever since I have been
>> totally blind I have had trouble main taining a sleep schedule.  It started
>> a long time before anyone was talking about it.  I didn't know how to
>> explain the difficulties I was having, but there was definitely a problem. I
>> was thrilled when I heard there were studies taking  place to first find
>> out, if the problem really exist. Then later when it was identified and
>> written up in The New England Journal of Medicine,  and then when studies
>> started trying to find out what to do about it.  Decades later it was
>> announced a pharmaceutical company  had developed a medication that could
>> help. I worked for 35 years with this problem, I fought it every way I could
>> think of. Exercise, going to bed the same time every night and getting up
>> the same time every morning.  Some things worked better than others, but
>> nothing totally fixed the problem. To answer the question ask below, yes sun
>> lamps were tried, not by me but many others. There was a clinic in New York
>> that even sold them along with machines that produced ions  that was suppose
>> to help.  It was soon proven this did not work. It's not the light on the
>> skin, it’s the light being detected by the Retina and a chemical reaction in
>> the brain  That helps with controlling the Zakadian rhythms
>> I think it would be very wrong  to try to hide this problem. If there is
>> medication which can help keep someone from having to struggle through a
>> career fighting this sleep problem, or just plain fix a very difficult
>> problem, then everyone should know about it.  The disorder can cause
>> problems at work, at home and with friends. Trying to hide it will not fix
>> it. However,  I do think the truth should be told. Not all blind people have
>> the problem. It mostly affects the totally blind and then only about 60 to
>> 70 percent of them. Also not  all people with sight are amuned, some of them
>> have the problem.  Some of the people with sleep problems are suffering with
>> other sleep  disorders. Because of this, Test should be done to figure out
>> what is going on before  medication is prescribed.
>> Don't hide it,  face it and help fix it.
>> Larry
>>
>>
>>
>> -----Original Message-----
>> From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Heather
>> Field via blindtlk
>> Sent: Monday, January 11, 2016 9:50 AM
>> To: Blind Talk Mailing List
>> Cc: Heather Field
>> Subject: [Blindtlk] Non-24 sleep disorder and Vander Pharmaceutical's
>> advertisements
>>
>> 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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