Personal Journey Stories

Spotlight—People With Hypersomnias

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

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


Share Your Journey

Coming to terms with having a chronic condition such as idiopathic hypersomniaKleine-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.

Share Your Journey

Disclaimer

The contents of this website, including text, graphics and other material, are for informational purposes only. This website is not intended to be a substitute for professional legal or medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Always consult your own attorney or other legal advisor with any legal questions you may have. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisors, products, procedures, opinions or other information referenced on this website. Reliance on any information on this website is solely at your own risk.

The Hypersomnia Foundation makes no representations or warranties about the satisfaction of any government regulations requiring disclosure of information on prescription drug products. In no event shall The Hypersomnia Foundation be liable for any damages (including without limitation incidental and consequential damages) or costs (including without limitation attorney’s fees) based on any claim arising from the use of this website and/or its content.