08 September 2015

Today's #Sleeptember FACT --- This week is Idiopathic Hypersomnia Awareness Week

Idiopathic Hypersomnia is quite a mouthful. Let's break it down. Idiopathic means "of unknown origin; mysterious." Hypersomnia means "overt or excessive sleepiness or somnolence."

Put them together and you have a condition in which people are sleepy all the time but they have no explanation for their sleepiness (such as staying up too late, working night shift, insomnia, sleep apnea, other non-sleep health conditions, mental health problems, drug interaction, etc.).

Once a cause can be identified (such as a diagnosis of Multiple Sclerosis, for example), then their hypersomnia is no longer idiopathic, but explained. Then, instead of that same person having a diagnosis of Multiple Sclerosis and Idiopathic Hypersomnia, they have a diagnosis of MS with hypersomnia as a symptom of their disease. And then they can benefit from working with a neurologist to identify ways to manage the excessive sleepiness within the framework of treating Multiple Sclerosis.

However, for the patient where all possible explanations for hypersomnia are ruled out, they are left only with Idiopathic Hypersomnia, or IH, as a diagnosis, which amounts to a mysterious case of chronic sleepiness, with few good ways to treat it.

Not a great way to get to the bottom of a problem that can challenge people to keep jobs, maintain friendships, even drive cars. Without knowing the origin of the problem, their doctors will be challenged to find appropriate medications for people with IH, and lifestyle changes they may attempt in good faith may or may not make a difference. Every effort to alleviate IH may end up just being trial and error.

Think that is frustrating? Imagine falling asleep at work several times a day while on a big project. Imagine trying to keep up with your toddler all day (keeping them out of trouble!) while the urge to sleep is nearly irresistible. Imagine taking an important exam and falling asleep in the middle of it. These are just a few of the challenges that people with IH face.

Hypersomnolence Australia is hosting Idiopathic Hypersomnia Awareness Week over the week of September 7-13, offering tons of facts, graphics and interactive opportunities to share knowledge about these disorders. Check out these realities about IH:

  • IH is often misdiagnosed and misinterpreted. 
  • Exact prevalence is unknown but IH is thought by many to be as prevalent as narcolepsy.
  • IH is a "true" and disabling neurological sleep disorder. People with IH are not lazy; sleepiness is a symptom of the disease and is usually not relieved by sleep or medications.
  • There are no approved medications specifically for IH. New and appropriate therapies are needed. 
  • Impaired cognitive ability, excessive sleep, and the continuous feeling of never being fully awake profoundly affects work, education and quality of life and leaves sufferers at risk of workplace and motor vehicle accidents

Whatever else Idiopathic Hypersomnia is, it is not a minor problem. Even if you don't have IH, someone driving the truck in the lane next to you might. A childcare worker with IH may be handling your child's medications while you are at work. A data entry person might be handling one of your bank or credit accounts. Accidents happen when people are sleepy, regardless the reason behind the sleepiness. These people need more research into the causes of their hypersomnia so they can lead healthy, safe lives. 

Learn how to raise awareness here:
  • Follow the Hypersomnolence Australia on Facebook
  • Follow the Hypersomnolence Australia on Twitter @Hyper_Sleep
  • Use the hashtags #IHAW2015 and #HAIHope to tell us what you hope for
  • Share your Patient Perspective in email to hypersomnolenceaustralia@gmail.com
  • Find other ways to participate here