SomnusNooze e-newsletter
News, stories and updates from the world of sleep
SomnusNooze topics: Personal journey stories
An (Almost) Excuse for Freaking Out Every Morning
In 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 for... read >
Raising Awareness from the Inside Out (aka Rip Van Winkle)
What 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. She came home from... read >
IH – The Thief of My Youth
I 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... read >
Jack & Julie Scholarship Program Announces Its First Scholarship Recipient with IH
The 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... read >
The Queen of Sleeping
In 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... read >
Idiopathic Hypersomnia Featured in Self Magazine!
The 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... read >
Board Member Amy Haraden Speaks About Living with IH at SLEEP2 Conference
On 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... read >
A Soothing Balm: Healing a Painful Experience
NOTE: this is part 3 of a 3 part series. For Part 1, click HERE. For Part 2, click HERE. I want to add a postscript to my Personal Journey story that appeared in the July 2017 edition of the HF’s SomnusNooze. It relates to the traumatic experiences I... read >
A Letter to My Health Care System About Hypersomnia
BY: Karen Berger – MN-USA NOTE: this is part 2 of a 3 part series. For Part 1, click HERE. For Part 3, click HERE. I have had idiopathic hypersomnia (IH) since I was 15 and was finally diagnosed 11 years ago. Since then I have been doing well on... read >
Share Your Journey | Hospital, Surgery, and Hypersomnia
MY PERSONAL JOURNEY: Hospital, Surgery, and Hypersomnia I want to share my story because a recent experience has had a profound impact on me. I am still processing it, and I think it is something anyone with hypersomnia needs to think about. I never... read >