[Blindtlk] non 24

Tue Jan 19 19:06:13 UTC 2016

Another thing.  Vanda's drug is so terribly expensive.  My husband started 
experiencing non 24 after some flight travel he did this summer, and I know 
air travel can upset the body clock sometimes, not having to do with 
blindness.  His doctor very wisely recommended another medicine with the 
same results as Vanda's, but much cheaper and affordable on insurance: 
called Rozerem.  He is doing very well with it.

I understand Vanda is going to be represented at our National Convention.

I can't imagine where they are getting their percentages of blind people 
with Non 24?  I don't believe it.  I think they should be taken to task.

Judy

-----Original Message----- 
From: Mike Freeman via blindtlk
Sent: Tuesday, January 19, 2016 10:52 AM
To: 'Blind Talk Mailing List'
Cc: Mike Freeman ; 'David Andrews'
Subject: Re: [Blindtlk] non 24

Dave et al:

I'm not saying Non-24 doesn't exist although I admit that I am skeptical as
to how widespread it is. Leaving aside, though, the question of the
existence or frequency of the syndrome, I consider the Vanda ad campaign
reprehensible. If the ads simply said: "Call 800-bla-bla if you think you
fit criteria for using hetlioz.", I wouldn't object. But advertisers seem
incapable of conveying a simple message without sensationalizing the
message.

Mike Freeman

-----Original Message-----
From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of David
Andrews via blindtlk
Sent: Monday, January 18, 2016 8:15 PM
To: Blind Talk Mailing List; Blind Talk Mailing List
Cc: David Andrews
Subject: Re: [Blindtlk] non 24

Steve and Mike:

I know I am behind on this, ... but nevertheless,
I would like to say a couple things.  First I was
skeptical too.  However, after talking to a
couple people in the study, who took the drug, I
think non-24-hour is real, and some blind people
have it.  I think that Vanda concentrated on us,
because we are a "pure play" for the condition
without lots of other variables.  I read
somewhere that they think that the condition may
impact seniors too, so I think this is their
ultimate goal.  That is a much larger market than
blind people, hence the willingness to spend
money on us to prove the condition and the cure.

Dave

At 03:06 PM 1/6/2016, Mike Freeman via blindtlk wrote:
>Steve: I completely agree with you. I find it
>somewhat odd that the pharmaceutical firm put so
>much effort into advertising and marketing to
>such a small population. Additionally, I find it
>horrifying when I hear ads purporting to come
>from blind people which say that a blindness -"
>related illness causes them to fall asleep at
>work. What an example of the capability of the
>blind!!! Mike Freeman > On Jan 6, 2016, at
>11:49, Steve Jacobson via blindtlk
><blindtlk at nfbnet.org> wrote: > > Gary, > > For a
>long time, I've had a very negative reaction to
>sleep study > conclusions that involve blind
>people.  In the past, there has been a > history
>of even educated people thinking of blindness as
>living in the dark > and feeling that there must
>be negative effects of constant darkness.  It >
>seemed sometimes that they would go to great
>lengths to prove what they > already knew just
>had to be true.  Over the years, I have had to
>adjust my > original position some partly
>because people I trust, such as yourself, have >
>felt that there may be a connection between
>blindness and sleep > irregularities.  Still, I
>read statements even in this current
>discussion > that raise red flags to me, and
>there are issues with the ad campaigns that >
>really puzzle me.  Perhaps some of the questions
>I have are answered > somewhere and I just have
>not gotten to them.  Here are some examples. > >
>There always seems to be a few people who use
>the logic "I am blind, I have > a sleep problem,
>therefore blind people have a sleep
>problem."  It isn't put > that simply or
>directly, but there is often a sense that any
>sleep problem > we have must be connected to
>blindness.  I find myself wondering if there
>is > really an understanding of the depths of
>sleep problems that exist among > sighted
>people.  I find that more than once when the
>subject comes up that > persons who are sighted
>acknowledge sleep difficulties.  I know of
>sighted > people who have fallen asleep at their
>desks, for example.  When one looks > at the
>marketing of sleeping aids, clearly sleep is a
>fairly widespread > problem.  Of course, I am
>not claiming that this disproves Non 24, but
>it > means we need to keep what we experience in
>perspective.  > > It is my understanding that
>non 24 can apparently be diagnosed by the >
>presence of a chemical in one's
>blood.  Therefore, I accept that this >
>condition exists and can be diagnosed
>accurately.  However, given that sleep >
>problems are encountered by sighted people, and
>given that it is likely that > many of them do
>not have non 24, how can it be assumed that if a
>blind > person has non-24 that it is the only
>sleep issue?  Do we know that the > Vanda drug
>might not be correcting other issues, issues
>that sighted people > might have, for
>example?  In other words, whether the Vanda drug
>works or > not, how do we know that Non 24 is
>playing the major role that is being >
>publicized? > > We know that each of us can
>react differently to many things.  If we have >
>non-24, how is it determined whether the
>symptoms justify treatment?  Many > Gary, > >
>For a long time, I've had a very negative
>reaction to sleep study > conclusions that
>involve blind people.  In the past, there has
>been a > history of even educated people
>thinking of blindness as living in the dark >
>and feeling that there must be negative effects
>of constant darkness.  It > seemed sometimes
>that they would go to great lengths to prove
>what they > already knew just had to be
>true.  Over the years, I have had to adjust my >
>original position some partly because people I
>trust, such as yourself, have > felt that there
>may be a connection between blindness and
>sleep > irregularities.  Still, I read
>statements even in this current discussion >
>that raise red flags to me, and there are issues
>with the ad campaigns that > really puzzle
>me.  Perhaps some of the questions I have are
>answered > somewhere and I just have not gotten
>to them.  Here are some examples. > > There
>always seems to be a few people who use the
>logic "I am blind, I have > a sleep problem,
>therefore blind people have a sleep
>problem."  It isn't put > that simply or
>directly, but there is often a sense that any
>sleep problem > we have must be connected to
>blindness.  I find myself wondering if there
>is > really an understanding of the depths of
>sleep problems that exist among > sighted
>people.  I find that more than once when the
>subject comes up that > persons who are sighted
>acknowledge sleep difficulties.  I know of
>sighted > people who have fallen asleep at their
>desks, for example.  When one looks > at the
>marketing of sleeping aids, clearly sleep is a
>fairly widespread > problem.  Of course, I am
>not claiming that this disproves Non 24, but
>it > means we need to keep what we experience in
>perspective.  > > It is my understanding that
>non 24 can apparently be diagnosed by the >
>presence of a chemical in one's
>blood.  Therefore, I accept that this >
>condition exists and can be diagnosed
>accurately.  However, given that sleep >
>problems are encountered by sighted people, and
>given that it is likely that > many of them do
>not have non 24, how can it be assumed that if a
>blind > person has non-24 that it is the only
>sleep issue?  Do we know that the > Vanda drug
>might not be correcting other issues, issues
>that sighted people > might have, for
>example?  In other words, whether the Vanda drug
>works or > not, how do we know that Non 24 is
>playing the major role that is being >
>publicized? > > We know that each of us can
>react differently to many things.  If we have >
>non-24, how is it determined whether the
>symptoms justify treatment?  Many > people have
>sleep difficulties that they address
>successfully through > various means, and it
>would seem reasonable to assume that in some
>cases > other approaches might be adequate.  How
>is this accommodated? > > We have become
>polarized to some degree around this
>issue.  Those of us who > are somewhat skeptical
>are often seen as clearly not having a problem
>and > therefore not understanding that others
>may not be so fortunate.  The > questions we
>raise are discounted.  Well, I don't raise
>questions to prove > that anyone does not have a
>sleep problem.  I also do not maintain that
>the > Vanda drug may not help some people, maybe
>even many people.  What concerns > me is that an
>environment is being created that more or less
>funnels people > into this particular solution
>when there are valid questions.  Also, the >
>picture painted by the ad campaign is pretty
>bleak.  I just don't see 70% of > us struggling
>to stay awake at our desks even though some of
>us do from time > to time.  I just think we need
>more answers than we have, and they need to >
>come from objective sources that don't stand to
>gain or loose depending upon > the answers. > >
>To those who have found the Vanda solution to be
>the answer and can afford > it, I am sincerely
>glad it has worked out.  Nothing said here is
>meant to > deny the fact that this drug may be a
>welcome solution in some or even many >
>cases.  It just seems to me that there are
>unanswered questions, and a > tendency to jump
>on the bandwagon while remaining silent about
>the ad > campaign. > > Best regards, > > Steve
>Jacobson > > -----Original Message----- > From:
>blindtlk [mailto:blindtlk-bounces at nfbnet.org] On
>Behalf Of Gary Wunder > via blindtlk > Sent:
>Tuesday, January 05, 2016 5:36 PM > To: 'Blind
>Talk Mailing List' <blindtlk at nfbnet.org> > Cc:
>Gary Wunder <gwunder at earthlink.net> > Subject:
>Re: [Blindtlk] non 24 > > I have enjoyed reading
>the comments about non-24, and when I 1st heard
>about > the efforts of a pharmaceutical company
>to market to blind people, I was > suspicious. I
>think I was also a bit defensive, assuming that
>the worst > would happen. > > I suspect that I
>suffer from non-24. There are times when I have
>to work > very hard to stay awake, even when I
>find things around me to be interesting > and
>thought-provoking. There are times when at 4
>o'clock in the morning I am > totally wide-awake
>and mad about it. Then I will be walking through
>a store > or working at my desk or even
>exercising, and I find that I am exceedingly >
>tired. This suggests to me that I do have a body
>clock and that periodically > that body clock
>gets off. > > I relate to the comments about
>being embarrassed while at work and >
>unintentionally falling asleep. It does not
>reflect well on any employee > when this
>happens, and I admit that more than once I have
>been embarrassed > about nodding off at times
>when I was paid to be awake. I have developed
>a > number of strategies for combating this, but
>I can't claim that they work > 100% of the time.
>If I catch myself in time, I can always stand
>up, pace, do > toe touches, or engage in other
>activities that I can blame on needing to >
>stretch my legs or my sore back. Sometimes they
>too require attention, but > it is more likely
>that I am trying to ensure that I stay
>awake. > > I don't know that this adds anything,
>but I do believe that the subject is > important
>enough that I am likely to put it on our
>convention agenda here in > Missouri. If non-24
>is real, we should not try to run from it. If
>the > marketing is not what it should be, we
>should not run from that either. > > > >
>_______________________________________________ >
>  blindtlk mailing list > blindtlk at nfbnet.org >

         David Andrews and long white cane Harry.
E-Mail:  dandrews at visi.com or david.andrews at nfbnet.org

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