In Case You Missed It! – September 2018

In Case You Missed It! – September 2018

In case you missed it, here are highlights from our social media to keep you up-to-date! From HF board members raising hypersomnia awareness at the Myotonic Dystrophy Foundation Conference to an insightful commentary from a science writer living with IH, we’ve got you covered!

A DAY IN MY LIFE… LIVING WITH IDIOPATHIC HYPERSOMNIA
Liz Sheeley is a professional science writer and editor who believes that “Misleading headlines and inaccurate reporting about science create uncertainty between fact and fiction. Research is an ongoing process that improves lives, but all too often that isn’t reflected in the media. It’s time to tell authentic and captivating stories about science, researchers and the results.” Ms. Sheeley captivates her readers through an eye-opening, educational, and entertaining blog. Recently she shared her personal story about living with IH: “…as an IH patient, I want to keep telling my own story…perhaps these words can help someone who is suffering from IH not feel so alone, and help my friends and family better understand how this chronic illness affects me.” Her moving and thoughtful essay is a must read.

BBC NEWS HIGHLIGHTS IH WITH A VIDEO!
See idiopathic #hypersomnia on the BBC: a woman with IH explains the disorder in this short, straightforward VIDEO. A great sign of growing awareness! Help spread the word and remember to use the hashtags #BeyondSleepy and #IH when posting on social media.

RAISING AWARENESS AT THE MYOTONIC DYSTROPHY FOUNDATION CONFERENCE
Hypersomnia Foundation board members, Betsy Ashcraft and Cat Rye, attended the annual Myotonic Dystrophy Foundation Conference in Nashville, Tennessee, where clinicians, researchers, industry representatives, and more than 400 families gathered to learn about daily living and symptom management strategies and to hear progress updates on research and drug development. Our board members promoted the mission of the Hypersomnia Foundation and actively raised awareness that hypersomnia is a life-altering symptom of myotonic dystrophy. During this meeting, we heard, ”My success is getting out of bed in the morning, but due to #sleep inertia I never feel refreshed during the day and fight the constant brain fog.” Sound familiar? We’re stronger together to uncover the causes of #hypersomnia. Read more about Viewing Hypersomnias Through the Lens of Myotonic Dystrophy.

I SUPPORT #IH RESEARCH BECAUSE…
We’ve asked many of you to share through our social media why you support IH research, and we’ve been overwhelmed by everyone’s response. We’ve been told you support IH research because “it steals too much of who I am and who I want to be.” You support IH research because “it’s a daily battle…to get things done” and “I’m sleeping my life away.” Go to our Facebook page for more great quotes and to share the reason why you support IH research. When people with IH can’t live up to their potential, everyone suffers, which is one of the many reasons we are working toward ensuring better days for all people with IH.

REGISTER WITH CoRDS
Nearly 1,300 people afflicted with IH or related sleeping disorders have enrolled in the Hypersomnia Foundation’s patient registry at CoRDS (Coordination of Rare Diseases at Sanford) providing vital data for researchers. Sharing information about your symptoms, previous treatments, and diagnostic journey holds the key to solving this complicated puzzle of rare sleep disorders. If you have IH or a related disorder and have not yet joined CoRDS, please register today!

WHAT IS THE DIFFERENCE BETWEEN IDIOPATHIC HYPERSOMNIA AND NARCOLEPSY?
Although they share some similarities, there are important differences. While people with narcolepsy are seized by sleep, people with idiopathic hypersomnia (IH) are consumed by sleep. Both disorders interfere with quality of life and ability to function. Learn more about IH and related sleep disorders, and consider making a tax-deductible donation to the Hypersomnia Foundation. Help us fulfill our mission of improving the lives of people with idiopathic hypersomnia and related sleep disorders.



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