You are the expert on what it’s like to live with idiopathic hypersomnia

Together we’ll spark better understanding and a new dawn for treatment and care

Submit a Written Comment by May 11

Submit a comment below on one or more of the following topics for inclusion in the EL-PFDD Voice of the Patient Report


  • Of all the symptoms and health effects of IH, which 1–3 have the most significant impact on you/your loved one’s life?
  • How does IH affect you/your loved one on best and on worst days? Describe your best days and your worst days.
  • How have your/your loved one’s symptoms changed over time? How has the ability to cope with the symptoms changed over time?
  • Are there specific activities that are important to you/your loved one that you/they cannot do at all or as fully as you or they would like because of IH?
  • What do you fear the most as you/your loved one gets older? What worries you most about your/your loved one’s condition?
  • What are you currently doing to manage your/your loved one’s IH symptoms and how did you decide on a treatment strategy?
  • How well do these strategies help you manage the most significant symptoms of IH?
  • What are the most significant downsides to your loved one’s current strategies and how do they affect daily life? (Examples of downsides may include impact on daily life, social stigma, etc.)
  • Short of a complete cure, what specific things would you look for in an ideal treatment for IH? When considering a new treatment, what factors are important to you?
  • When considering a treatment for IH, what factors would be too burdensome for you, in terms of annual visits, requirement for injections, need for surgery?