[Blindtlk] Non-24 sleep disorder and Vander Pharmaceutical's advertisements
Carly Mihalakis
carlymih at comcast.net
Tue Jan 12 04:49:52 UTC 2016
Evening, everyone,
Non-24, at least as I understand it, is
a condition specific to people without light
perception, that is, it is not a sleeping
disorder, in it of itself, but a lack of light
stimulation to the brain which ultimately
disrupts the Cercadian rhythem. At 06:10 PM
1/11/2016, Larry Wayland via blindtlk wrote:
>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 >> slleeping through the night? >> •Do you
>find you have a sttrong urge to nap during the
>day? >> •Is it hard for youu to concentrate? >>
>•Are you feeling restless, overtireed, or
>frustrated? >> •Do you feel your sleep patterns
>aare different from those around you? >> •Does
>it seem liike 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 >> >> Send blindtlk mailing list
>submissions to >> blindtlk at nfbnet.org >> >>
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>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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