Idiopathic Hypersomnia Awareness Week (9/8 – 9/14)

Today marked the first day of Idiopathic Hypersomnia Awareness Week.  Idiopathic Hypersomnia (IH) is a rare sleep disorder characterized by excessive daytime sleepiness. People with IH are unrefreshed by nighttime sleep and naps, regardless of duration. Many also have difficulty awakening from sleep (sleep inertia) and feel groggy and disoriented upon waking (sleep drunkenness).  The lack of restorative sleep brings on secondary symptoms such as anxiety, headaches, problems with memory and concentration, and more.

IH is poorly understood, has scarce research funding and little public awareness.  Because of this, the road to diagnosis is usually long and frustrating.  Even after diagnosis, treatment is challenging as there are currently no FDA-approved medications. Existing stimulants and wake-promoting medications prescribed for conditions like narcolepsy have been seldom studied in IH patients.

You can help spread awareness of IH by joining and sharing the Facebook event page (click on banner below). Also, check out this great new blog by a IH advocate here: http://www.hypersomnia.info/.

IH Awareness Week 2014

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3 Comments. Leave new

  • Hi Julie! Thanks so much for sharing about Idiopathic Hypersomnia – it means the world to those of us living with it <3

    Reply
  • Thanks for sharing this, Julie. The Preston family appreciate having you and Project Sleep as advocates for ALL somnolence disorders. Thanks for all that you do – you are the best.

    Reply
  • Ashley Caddel
    December 7, 2021 9:56 pm

    Thank you for sharing this, I was diagnosed with this a few years into college but I suspect that I had it since the middle of high school if not earlier. It’s widely unknown to most people and sometime I feel even my own doctors don’t take it seriously. My life was crashing before my eyes and nobody knew how to help. It’s nice to know that somebody understands.

    Reply

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