What’s it like to live with a hypersomnia?

Spotlight — people who have hypersomnias

What’s it like to walk a mile in the shoes of people with hypersomnias? Read their personal stories below.

Or see all our personal journey stories.


Personal journey stories

2020 October – Christina Brundage, HF Volunteer and IH Patient Advocate – “Christina’s Story: Volunteering for IH Clinical Trials

2020 October – Michelle Emrich, MD – “A Doctor’s Once Agile Brain Broken by IH” – Video courtesy of Michelle Emrich

2020 October – Meghan Mallare – “Sleeping My Life Away” – Video courtesy of Meghan Mallare

HF volunteer Victoria Kirby-York tells her IH story to Science Magazine.

Share your journey

Coming to terms with having a chronic condition such as idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy type 1 or 2 often involves a long and difficult process. Unfortunately, the journey doesn’t end once you reach the correct diagnosis. Knowing that others have taken a similar journey can help lower your burden. And hearing about others’ coping strategies can help people who are currently struggling.

Maybe you found the words that helped a doctor understand you. Perhaps you made specific strategies over the years that helped you to function better. Possibly you identified a new career that helped you to maximize your potential. Consider helping others by sharing your story with us. Click the button below.

You can also apply to match with a medical student who wants to learn more about living with a rare disease at Global Genes RARE Compassion Project.

Share your journey

Published Apr. 29, 2020 |
Revised Jan. 22, 2024