SomnusNooze Articles > Personal Journey Stories
2020 is a Leap Year, which gives you an extra day in February to get up-to-date with the news we’ve shared via social media. Hope you enjoy this latest edition of “In Case You Missed It!” TIME TO CELEBRATE: The Hypersomnia Foundation celebrates its sixth...
Continue ReadingHappy New Year! Let’s start 2020 by being well informed! Get up to date with the news we’ve shared via social media in the latest “In Case You Missed It!” TAKE A 10-MIN SURVEY AND HELP NORD LEARN MORE ABOUT IH! The National Organization for Rare Disorders,...
Continue ReadingIn this Personal Journey story, a 19-year-old woman shares how it really feels to have IH. Her feelings run the gamut – from frustration to anger to fear to depression to sorrow. Even with a diagnosis of IH, she still feels the need to apologize...
Continue ReadingWhat if you decided to take a nap but didn’t wake up for 6 months? You might think this is a version of the famous “Rip Van Winkle” story by Washington Irving, but it’s actually the story of L.B., a person with IH in Scotland....
Continue ReadingIn 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...
Continue ReadingI was 15 years old when my life was turned upside down. In my early years, I was a girl who played sports, participated in school activities, maintained good grades, and was friends with just about everyone. However, during the summer of my sophomore year...
Continue ReadingThe Hypersomnia Foundation is very pleased to report that a Plantation, Florida, high school senior named Jenny is the first person with idiopathic hypersomnia (IH) to receive one of the $1,000 scholarships awarded this year by Project Sleep’s Jack & Julie Narcolepsy Scholarship program. The...
Continue ReadingIn this Personal Journey story, a “Queen of Sleeping” recounts her struggles to obtain a correct diagnosis, after first receiving diagnoses of lupus and POTS from a variety of doctors. My journey to a diagnosis of idiopathic hypersomnia (IH) is probably not unique. Like many people...
Continue ReadingThe Hypersomnia Foundation's own Board Member, Catherine Page-Rye, and Medical Advisory Board Chair, Dr. Lynn Marie Trotti, were interviewed for this December 2017 article, which describes what it is like to live with idiopathic hypersomnia. Read the full article here: https://www.self.com/story/no-coffee-wont-cure-my-hypersomnia ...
Continue ReadingOn June 3, 2017, Board Member Amy Haraden participated in a Patient Panel at the SLEEP2 (PCORI) Conference organized by Project Sleep. SLEEP2 is a project co-led by the University of Arizona, the Sleep Research Network, and Project Sleep and is funded by the Patient-Centered...
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