Idiopathic Hypersomnia (IH)

What is Idiopathic Hypersomnia (IH)?
Idiopathic hypersomnia (IH) is a neurological sleep disorder in which patients may sleep 9 hours or more over 24-hour periods without feeling refreshed upon waking. More information about IH may be found on the NIH’s website: https://rarediseases.info.nih.gov/diseases/8737/idiopathic-hypersomnia

What is the prevalence of Idiopathic Hypersomnia (IH)?
Idiopathic hypersomnia (IH) is not common in the general population with a prevalence rate around 0.3%.

How is Idiopathic Hypersomnia (IH) diagnosed?
The diagnosis of IH relies upon the exclusion of other causes of excessive daytime sleepiness (EDS). More information about diagnostic criteria for IH may be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2266276/.

Is there any specific gene/pathway in Idiopathic Hypersomnia (IH) that has been identified?
There is no specifically identified genetic pathway associated with IH at the time of this publication.

How is Idiopathic Hypersomnia (IH) treated?
Treatment options for IH are typically aimed at excessive daytime sleepiness (EDS), rather than at sleep duration or confusion upon waking up. Wakefulness-promoting agents (e.g. modafinil), as well as traditional psychostimulants (amphetamines and their derivatives) are often prescribed to promote wakefulness. More information on treatment may be found here: https://rarediseases.org/gard-rare-disease/idiopathic-hypersomnia/ . Additionally, off-label promotion of drugs which aid in the treatment of narcolepsy have been used to treat IH. A recent NY Times article highlighted the potential FDA approval for a narcolepsy drug (gamma-hydroxybutyrate) in the treatment of IH. That article is located here: https://www.nytimes.com/2021/08/12/health/GHB-hypersomnia-sleep-FDA.html.

Are there any clinical trials underway for Idiopathic Hypersomnia (IH)?
The National Institutes of Health (NIH) has completed 10 clinical trials for IH. Currently, there are 7 clinical trials underway for the condition. More information on future studies and patient recruitment can be found here: https://clinicaltrials.gov/ct2/results?cond=idiopathic+hypersomnia&Search=Apply&recrs=g&recrs=h&recrs=e&age_v=&gndr=&type=&rslt=

How can RareShare be helpful to Idiopathic Hypersomnia (IH) patients and families?
The IH Rareshare community has 21 members. There are currently 3 active discussions underway. New discussions can help to connect patients, health workers, caregivers and families interested in IH and provide them continual access to community resources.