Dear (Insert Name)

Someone close to me is struggling with a rare neurological disorder called idiopathic hypersomnia (IH). Will you join me by participating in the Hypersomnia Foundation’s Let’s Get #beyondsleepy challenge, to raise awareness and funds for research of idiopathic hypersomnia?

The symptoms of IH include an insatiable need for sleep even after a full night’s slumber, as well as sleep inertia (“…the transitional state between sleep and wake, marked by impaired performance, reduced vigilance, and a desire to return to sleep.” Dr. Trotti, Emory). In a culture where feeling sleepy/tired/fatigued is a common experience, even medical professionals struggle to define when the “norm” crosses the line to a medical disorder. Symptoms unique to a person with IH can, therefore, go unrecognized for a very long time, sometimes decades.

The feeling of not being fully awake impacts performance of mental and physical tasks on a daily basis. Sadly, these symptoms are life altering; missing out on special moments with family and friends, struggling to maintain jobs, marriages, and/or attend school.

Why Let’s Get #beyondsleepy challenge?

  1. We don’t know how many people have IH. This number is vital for scientists to apply for grants and encourage pharmaceutical companies to study IH.

  2. We don’t have a biomarker, a substance in the body, such as blood or spinal fluid that can tell us whether or not a person has IH.

  3. The tests that we do have are often inaccurate and repeating them is very expensive.

  4. There is no FDA approved treatment; although wakefulness-promoting medications are sometimes prescribed, "off-label". Unfortunately, these medications don’t work well for everyone, and they may stop working over time and/or have bothersome side effects.

What is the “Let’s Get #beyondsleepy” challenge:

  • Have a picture taken of yourself in your PJs with your favorite pillow with a “Let’s Get #beyondsleepy” sign available here.

  • Share your picture via email and/or social media with your family and friends and challenge them to do the same. (It works best if you challenge others to respond within 72 hours!)

  • Make a donation of $25.00 (although no donation is too small or too large) to the “restricted to scientific research” button at www.hypersomniafoundation.org/2016givingseason

I support the vision of the Hypersomnia Foundation: Through awareness and raising funds restricted to research, improved diagnostic tests and targeted treatments will be available, that will assure my loved one will know what it feels like to be fully awake and alert.

 

In gratitude,

 

 

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