Spotlight—People With Hypersomnias
What is 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.
Or find all our Personal Journey stories HERE.
Videos
To check out HF volunteer Victoria Kirby-York telling her IH story to Science Magazine, click HERE.
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
2017 June – HF Board Member Amy Haraden Speaks About Living With IH at SLEEP2 Conference
Share Your Journey
Coming to terms with having a chronic condition such as idiopathic hypersomnia, Kleine-Levin syndrome, or narcolepsy often involves a long and sometimes convoluted process. Unfortunately, the journey does not end once the correct diagnosis is reached. Knowing that others have taken a similar journey, however, can lessen a person’s burden. And hearing about others’ coping strategies can help people who are currently struggling.
Maybe you found the words that made a doctor finally listen to you. Perhaps you developed specific techniques over the years that helped you to function. Possibly you identified a new career that enabled you to maximize your potential. Don’t leave other folks with hypersomnia by the side of the road to complete this journey alone. Consider assisting others by sharing your story with the Hypersomnia Foundation? Click below to share your journey with HF.
You can also apply to match with a medical student who wants to learn more about living with a rare disease: Global Genes RARE Compassion Project.