Special thanks to Andrew Cowen for contributing to this article.
Sighted Non-24 Sleep-Wake Disorder isn’t well known, even by doctors. Raising awareness is how we will improve the diagnosis and treatment of Non-24. Currently, those who know about Non-24 may not realize sighted people can develop it. This may be the only disorder where people have been discriminated against because they can see.
Even our friends and doctors may unintentionally gaslight or invalidate the severity of Non-24 by saying things like, “Yeah, I have a hard time falling asleep sometimes, too.” But Non-24 isn’t just the inability to fall asleep sometimes. It’s a complete deviation in a normal rhythm that is deeply systemic and difficult to manage. Raising awareness is the only way to help people understand the difference between occasionally having trouble sleeping and a systemic inability to entrain to a 24-hour day.
So, here’s what we can do to help raise awareness for this rare and incredibly difficult condition:
Call Vanda
Call Vanda Pharmaceuticals and ask them to be vision-inclusive in their advertising for Hetlioz. Simply let them know there are sighted people with Non-24 and that people like us deserve representation, too.
Only featuring blind people in their advertising makes it difficult for sighted patients to get a prescription for Hetlioz. Doctors watch ads, too, and if they get the impression Non-24 only occurs in blind people, sighted patients my struggle to get diagnosed.
Call them 24/7 at: 1-855-856-2424
Contact Local News
Contacting your local news can allow you to highlight the oddness, rarity, and difficulty of Non-24. This option is best for people who don’t mind being open about having Non-24 as the news may want to interview you. This is especially important around November 24th for Non-24 Day or Rare Disease Day (February 28th/29th).
Get Featured on our Social Media
Send us your story. We want to hear about how you (or your loved one) developed Non-24, how you were diagnosed, or how Non-24 affects your life. Help us show the world what it’s like to have Non-24.
Contact us HERE.
Send Postcards
We will have a page with print media COMING SOON. All you will have to do is print, stamp, and send them. Using card stock or having these printed at a local printer is best. If you don’t have a local printer, Vistaprint or similar can be used. These cards can be sent to sleep organizations, sleep clinics, neurologists, GPs, governmental organizations, and more.
Raise Awareness on Rare Disease Day
Rare Disease Day is February 29th on Leap Years and February 28th other years.
Why do we advocate for Sighted Non-24 on Rare Disease Day?
Non-24 is classified as a rare disease and is featured on the National Organization for Rare Disorders website; they claim, “Non-24 occurs in 55-70% of completely blind people, but also occurs in an unknown number of sighted people.” We do not know how many Sighted Non-24 patients exist because there is so little research. Doctors, too, may often fail to recognize that a sighted person can have Non-24.
Non-24 is typically due to a completely blind person’s inability to sense light. Without light cues, the Circadian Rhythm is thrown off its normal 24-hour track. In most cases, a person’s sleep shifts forward around the clock.
But in Sighted Non-24, the causes are much more varied and unclear.
We want sleep doctors, neurologists, medical professionals, and people around the world to recognize that sighted people can have Non-24, too.
Simply because a disease is rare does not mean it doesn’t exist. According to Global Genes, 1 in 10 Americans lives with a rare disease.
Raise Awareness on Non-24 Day
The official Non-24 Awareness Day is November 24th. While most of the world uses the international date format day-month-year, the U.S. uses month-day-year. This date was chosen for the N in November and the 24th day, making it N-24. This is another great date to use to help raise awareness, especially when contacting press agencies.