USABA is proud to announce our newest sponsor Vanda Pharmaceuticals and 24Sleepwake.com which are conducting an awareness campaign for a sleep-wake disorder commonly experienced by people who are blind. Like them on Facebook by clicking here, follow them on Twitter by clicking here and check out their website here.
If you or know someone who is totally blind and suffers from irregular sleep patterns, we want to hear from you. Vanda Pharmaceuticals is conducting a study that is evaluating an investigational treatment. The study does not require any overnight stay in a lab and participants are compensated for their time and travel expenses. For more information on the clinical trials and to complete a survey to better understand the condition and determine if you may be eligible to participate, call 1-888-389-7033, Email email@example.com or visit www.non24registry.com
Inability to Maintain a Good Night’s Sleep May be a Sign of an Under-Recognized Circadian Disorder
More than 50 percent of individuals who are totally blind may suffer from an under-recognized condition which prevents them from maintaining a regular sleep pattern; impacting their health, lifestyle and relationships.
Known as Non-24-Hour Sleep-Wake Disorder (Non-24-Hour), the condition can push the timing of an individual’s body clock off the 24-hour clock, making them unable to maintain a regular schedule of sleep and wakefulness. Those with the condition may experience bouts of severe insomnia, sleep deprivation and excessive daytime sleepiness during the day, all on an irregular and rolling basis.
“Sometimes I fall asleep and stay asleep,” says Dan Roy, a Braille translator for Horizons for the Blind in Des Plaines, Illinois who is congenitally blind and has experienced recurring bouts of troubled sleep and daytime fatigue since childhood. “Other times I wake up after a few hours and can’t get back to sleep.” At work, Roy adds that he must “…try to fight through my sleepiness” in order to maintain productivity.
What is the Cause?
For individuals with no light perception, the lack of cues for daylight can cause the sleep cycle, one of many circadian biological rhythms, to be out of synch from the 24-hour clock, gradually shifting their body’s perception of when it is day versus when it is night over the course of weeks and months.
Extensive research is underway to learn more about the cause and possible treatment of the condition. One organization, Vanda Pharmaceuticals, is conducting a series of nationwide clinical trials of people with total blindness. These studies continue to recruit eligible participants and Vanda has screened more than 1,400 individuals for potential participation to date. Recently reported results from one of the trials demonstrated the ability to reset the body clock and align it to a constant 24-hour day in people with Non-24-Hour who are totally blind.
What is the Impact?
For some totally blind individuals the condition can have significant impact on their social and occupational lives. “You can be in the middle of a sentence and fall asleep for 30 seconds or so just because your body needs that time so badly because it’s not sleeping at night,” says Mindy Jacobsen of Brooklyn, New York, who lost total light perception 15 years ago and began experiencing symptoms of Non-24-Hour almost immediately. The unpredictability of Mindy’s sleep pattern forced her out of full time employment, though she now maintains several part time jobs.
What can I do if I have these Symptoms?
If you are experiencing an irregular sleep pattern you can reach out to your primary care physician and ask whether the symptoms are an indication of Non-24-Hour. They may recommend a referral to a sleep specialist for further information. Maintaining a sleep diary to include timing, duration and quality of sleep, as well as a record of consumption of caffeine, alcohol and other medications may help guide your conversations with a physician.
Totally blind individuals experiencing symptoms of Non-24-Hour may also be a candidate to participate in the clinical trials led by Vanda Pharmaceuticals. The studies are evaluating an investigational treatment and do not require any overnight stay in a lab and participants are compensated for their time and travel expenses. For more information on the clinical trials and to complete a survey to better understand the condition and determine if you may be eligible to participate, call 1-888-389-7033, Email firstname.lastname@example.org or visit www.non24registry.com