[Blindtlk] Non-24 sleep disorder and Vander Pharmaceutical's advertisements
Arielle Silverman
arielle71 at gmail.com
Tue Jan 12 04:35:25 UTC 2016
I could be wrong, but I believe the Vanda drug is just another form of
melatonin, which has already been heavily marketed toward shift
workers and frequent overseas travelers. In theory, anyone who is
sighted and needs to sleep during daylight hours for any reason would
need the same kind of pharmacological intervention as someone who is
blind and needs the cue that it's dark out.
Arielle
On 1/11/16, Larry Wayland via blindtlk <blindtlk at nfbnet.org> 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
>>> 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
>>>
>>> Send blindtlk mailing list submissions to
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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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