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.
- My Disability May Be Invisible, But Here’s Why I’m Done Hiding It — In this personal story published on HuffPost, a woman with postural orthostatic tachycardia syndrome (POTS) shares why she’s done hiding her invisible disability. It can be a struggle to be vocal about your daily needs; hopefully this article will encourage you to find your voice.
Personal journey stories
2020 October – Michelle Emrich, MD – “A Doctor’s Once Agile Brain Broken by IH” – Video courtesy of Michelle Emrich
2017 June – HF Board Member Amy Haraden Speaks About Living With IH at SLEEP2 Conference
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.