I found it interesting, when I was involved in the initial study conducted 
by Steven Lockley, the ophthalmologist who tested my ability to perceive 
light asked me whether I dreamed I saw.  I said I didn't.  He said even if a 
baby loses the ability to see shortly after birth, he will dream he sees. 
So my lack of sighted dreams proves I never at all saw.
----- Original Message ----- 
From: "Vinny Samarco" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, August 07, 2012 9:41 AM
Subject: Re: [The Conduit] Blind people more likely to suffer from 
light-relatedsleep disorder


Hi Angel,
They wouldn't let me in the study because they said I had too much light
percption. Now, when I go into a room, I can't see any lights at night, and
in the day I just see a little sun.  I have had this problem which is only
getting worse, for at least 11 years.
Vinny
----- Original Message ----- 
From: "Angel" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, August 07, 2012 6:12 AM
Subject: Re: [The Conduit] Blind people more likely to suffer from
light-relatedsleep disorder


>I am involved in the study now.  I trust my involvement will assist drug 
>companies to find an answer for this plaguing problem for us.  Dear Doris 
>might want to research how to become involved as well.  As the study  of 
>this drug is also being done in
> Germany.
> ----- Original Message ----- 
> From: "Vinny Samarco" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Tuesday, August 07, 2012 1:22 AM
> Subject: Fw: [The Conduit] Blind people more likely to suffer from 
> light-relatedsleep disorder
>
>
> Hi Everyone,
> I know this may be somewhat off topic, however, If any of you suffer from
> this as I do, maybe you will be glad to see the clarity of this 
> explanation.
> God bless.
> Vinny
> ----- Original Message ----- 
> From: "Mary Lorefice" <[log in to unmask]>
> To: "The Conduit" <[log in to unmask]>
> Sent: Monday, August 06, 2012 6:41 PM
> Subject: [The Conduit] Blind people more likely to suffer from
> light-relatedsleep disorder
>
>
> Blind people more likely to suffer from light-related sleep disorder
> Published on Monday August 06, 2012
> Alyssa A. Botelho
> The Washington Post
>
> WASHINGTON-Melanie Brunson, who has been blind since birth, suddenly awoke
> and found herself standing at 15th and K streets in Northwest Washington.
>
> She had stopped at the corner on her way home from work to await a safe 
> time
> to cross and had dozed off. Even on awakening, she was so groggy she
> couldn't
> focus well enough to hear passing cars and judge when it was safe to 
> cross.
> The incident was a startling reminder of the sleep problems that had 
> plagued
> her since birth.
>
> "Who knows how long I had been standing there," she said. "I realized then
> that my safety was in jeopardy, and I began searching for remedies with a
> vengeance."
>
> But years after that 2005 traffic scare and many subsequent visits to
> doctors and sleep clinics, Brunson still lies awake in bed night after 
> night
> and then is desperately sleepy during the day.
>
> Although doctors have not definitively identified her disorder, 
> researchers
> believe she suffers from non-24-hour sleep-wake disorder, or "non-24." The
> chronic and little-known sleep condition is characterized by a body clock
> that is not aligned with a 24-hour day.
>
> Though non-24 can affect those with normal vision, it is especially
> prevalent among blind people who cannot sense light, the strongest
> environmental signal that synchronizes the brain's sleep-wake pattern to 
> the
> 24-hour cycle of the Earth day.
>
> According to the preliminary results of an ongoing clinical trial that 
> were
> released earlier this summer, of the estimated 65,000 to 95,000 blind 
> people
> in the United States who have sleep complaints, up to 70 per cent might
> suffer from non-24.
>
> "It is a devastating condition ... because you are trying to keep a job 
> and
> a social life while your body's internal clock is competing against the
> 24-hour outside world," said Harvard neuroscientist Steven Lockley, who is
> one of the principal investigators of the clinical trial.
>
> It was Lockley who told Brunson about non-24 at a meeting of the American
> Council of the Blind (ACB).
>
> "My boss at the time, who had been hearing about my sleep problems for
> years, dragged me by the arm to Dr. Lockley and demanded, 'Fix her!'"
> Brunson said.
>
> With that introduction, Brunson, who is now the executive director of the
> ACB, enrolled as a participant in one of Lockley's early studies on sleep
> disorders of the blind. After working with his team, she learned that her
> body clock ran on a cycle longer than 24 hours.
>
> The human body clock consists of an intricate network of chemical and
> electrical signals controlled by two rice-grain-size structures deep in 
> the
> brain. Most people's internal clock runs slightly longer than 24 hours.
> However, among sighted people, the clock is reset each day by 
> light-sensing
> cells in the eyes that signal to the brain that it is daytime.
>
> For the blind, this reset mechanism fails. The resulting symptoms are
> similar to those experienced by sighted people who chronically disrupt 
> their
> light cycle by shift work or travel across time zones.
>
> Here is how it works: In theory, a blind person with an internal body 
> clock
> of 24.5 hours may feel ready to fall asleep at 10:30 p.m. on Monday but 
> not
> be able to fall asleep until 11 p.m. on Tuesday. This cycle is 
> unrelenting,
> making those affected want to fall asleep later and later each day.
>
> For Brunson, the waves of disturbed sleep typically occur in three- or
> four-week episodes of insomnia that cause her to wake up between 1 and 2 
> in
> the morning, regardless of when she goes to bed.
>
> Jack Mendez, a 35-year-old information technology professional who learned
> last year that he has non-24, often finds himself awaking between 2 a.m. 
> and
> 5:30 a.m., unable to fall back to sleep. On the evening that he spoke with 
> a
> Post reporter, he had been awake since 3 in the morning.
>
> Some who suffer from non-24 have found limited relief through treatment 
> with
> synthetic versions of the hormone melatonin, which works to drag forward 
> the
> body clock's reset time by providing a chemical pulse to the brain that
> signals nighttime.
>
> Synthetic doses of melatonin help alleviate Brunson's non-24, but the
> treatment does not work at all for Mendez.
>
> "It gives me nightmares and cold sweats, and I feel hung over the next 
> day,"
> he said.
>
> Shuttled from doctor to doctor as a child, Mendez has been prescribed
> everything from sleeping pills to psychotropic drugs. Thus far, he has 
> found
> no treatments that help. He praises his fiancée for her patience in
> tolerating their often opposite sleeping schedules.
>
> There are no FDA-approved medications to treat non-24. However, the 
> ongoing
> clinical trial has advanced from screening participants for non-24 to
> testing a candidate drug called tasimelteon. The drug, which is intended 
> to
> treat non-24 and other circadian rhythm sleep disorders, is being 
> developed
> by Washington, D.C.,-based Vanda Pharmaceuticals.
>
> Vanda scientists hope that tasimelteon, which has a similar molecular
> structure to melatonin, will have superior beneficial effects. Synthetic
> melatonin itself is classified as a dietary supplement.
>
> Northwestern University professor Phyllis Zee, a neuroscientist and sleep
> specialist who was not involved in Vanda's research, said that 
> tasimelteon's
> long-term effects remain unclear, but at the very least the trial is
> valuable in raising awareness about and creating a better understanding of
> the condition.
>
> "Most physicians and blind patients are unfamiliar with non-24, and a
> large-scale study of the totally blind is crucial in developing criteria 
> for
> diagnosis," she said.
>
> Although Brunson and Mendez both participated in the screening phase of 
> the
> tasimelteon trial, neither of them chose to take the drug because they 
> were
> wary of its impact on job performance and its interactions with other
> medications.
>
> But Mendez, who is at the Louisiana Center for the Blind finishing a
> nine-month training program that will help him travel and work more
> independently, plans to rejoin the trial and try tasimelteon after his
> course ends.
>
> "The training has helped me learn to think about blindness as just a
> characteristic, not as a thing that consumes my life," he said. "Of 
> course,
> a good sleep helps with that thinking, too."
> MaryL
>
>
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