Newly Diagnosed

“I’ve just been diagnosed with idiopathic hypersomnia (or a related sleep disorder). What does this mean?”

The Hypersomnia Foundation has compiled FIVE THINGS FOR YOU TO KNOW, to give you the information and resources you need to help you take the first steps forward in understanding and coping with your new diagnosis.

“I’ve just been diagnosed with idiopathic hypersomnia (or a related sleep disorder). What does this mean?”

1. Understand Your Diagnosis

Idiopathic Hypersomnia. Learn the basics about IH.
Related Sleep Disorders. Learn the basics about narcolepsy, Kleine-Levin syndrome, and hypersomnias related to certain other conditions.

2. Get Support

Coping with a chronic condition can be stressful and challenging. Seek out support as you go through the process of diagnosis and treatment. Also, share Hypersomnia Foundation (HF) resources with family, supporters & friends so they too can understand what you are going through.

Getting Support from a Mental Health Professional. Why this is important for everyone to consider.
Join a Support Group. The Hypersomnia Alliance (HA) maintains a list of some available support groups, or you can also follow HA on Facebook HERE. Also see our Self-Advocacy Tips for more information on finding and choosing the right group for you.
Education Essentials. Students and parents, check out our comprehensive set of resources for both K-12 and Higher Ed students.
Personal Journey Stories. Read about how IH and related disorders affect real people.
Disability & Health Insurance. Information to help you access workplace accommodations, medications and disability insurance coverage.

3. Get Treatment

Treatment. Learn about the options.
How to Choose a Healthcare Provider. What’s important to consider and what questions to ask.
HF’s Healthcare Provider Directory. Find providers with experience treating hypersomnias.

4. Advocate for Yourself

HF’s Brochure. Download and share (available in Deutsche; English; Español; Français; 日本人).
HF’s IH Medical Alert Card. Download and fill it out now.
Self-Advocacy Tips. Check out HF’s guide. Self-advocacy means representing yourself to the best of your ability and being proactive about your care. Being involved in the decision-making process with your healthcare provider about your care and treatment will help you feel confident that everything possible is being done to manage your symptoms.

5. Take Action

Become empowered and involved, both for yourself, and for the future of all those with IH and related disorders.

International Patient Registry. Joining the registry provides valuable data to sleep researchers; your data might help lead to the next big breakthrough!
HF Events. Meet other people with hypersomnias and their families, learn about new research and treatments from top sleep clinicians and researchers, and much more…
Donate to the Hypersomnia Foundation. Please consider becoming a monthly donor! Monthly donations help us to budget and plan – though donations of any size are deeply appreciated, whether one-time or monthly. The Hypersomnia Foundation is the leading patient advocacy group for people with idiopathic hypersomnia (IH) and related sleep disorders. As a 501(c)(3) non-profit working on behalf of rare sleep disorders, donations from our community are absolutely essential to our work. Without you, there would be no Hypersomnia Foundation! HF is a careful steward of every donation. See our Biennial Report.

Stay in Touch with HF

Sign up with the Hypersomnia Foundation to stay up to date with the latest news and upcoming events. We’ll also send you a welcome package!

HF’s International Patient Registry

Joining our registry at CoRDS (Coordination of Rare Diseases at Sanford) provides valuable data to sleep researchers. Your data can help lead to the next big breakthrough!