[Blindtlk] Non-24 sleep disorder and Vander Pharmaceutical's advertisements
Larry Wayland
lhwayland at sbcglobal.net
Tue Jan 12 02:10:11 UTC 2016
There are all kinds of chemical disorders in the brain, I guess this is one of them.
There are a lot of people who have trouble with sleep schedules
Shift workers, jet lag, think of the pilots that fly through several time zones several times a week. If this medication works for most people it will be a lot of help.
Larry
-----Original Message-----
From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Lanie Molinar via blindtlk
Sent: Monday, January 11, 2016 7:08 PM
To: Blind Talk Mailing List
Cc: Lanie Molinar
Subject: Re: [Blindtlk] Non-24 sleep disorder and Vander Pharmaceutical's advertisements
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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