Patient Organization Highlight
The Hypersomnia Foundation, Inc. is a nonprofit, patient advocacy organization working on behalf of people with idiopathic hypersomnia and related rare sleep disorders. Diane Powell, the current Chair of the Board of Directors and CEO, explains, “Idiopathic hypersomnia (IH) is a chronic, neurological sleep disorder. It’s often called a rare sleep disorder, but we suspect that it is more likely “rarely-diagnosed,” since it is not yet well known.” Powell goes on to explain that IH can easily “hide in plain sight” since feeling tired and sleepy is a common complaint for many.
The Hypersomnia Foundation was founded in 2014 to give IH patients a voice, to raise awareness of the disorder, to advocate for more research and to provide information and resources. The foundation offers a wealth of resources for providers, researchers, patients and advocates through their website, conferences and webinars.
LIVING WITH HYPERSOMNIA
“IH is a very different kind of tired,” Powell states. “People with IH suffer from excessive daytime sleepiness, which is not eased by a full night sleep or a nap. They may also struggle to wake up (“sleep drunkenness”) and/or have cognitive issues (“brain fog”).” Obviously, symptoms such as these can interfere with day-to-day living and make work, studies and relationships difficult to maintain.
Powell says of The Hypersomnia Foundation, “I have been most struck by how long people with this disorder struggle on their own—often blaming themselves for their need to sleep and bearing the blame of others—before getting a diagnosis. For many people, it takes years to get a proper diagnosis. Often the news they have a sleep disorder is received with relief and emotion. One newly-diagnosed patient exclaimed, ‘I thought everyone was as sleepy as I was, I just figured they somehow dealt with it much better than I did!’ Our Foundation is here to help.”
At this time, there are no FDA-approved treatments for IH, but patients are commonly treated with “off-label” medications usually prescribed for narcolepsy. The efficacy of these treatments varies among patients.
Powell finishes by adding, “The Hypersomnia Foundation is just seven years old, and we are proud of how far we have come, but our work has really just begun. We will continue to work on behalf of people with IH and related disorders for a long time to come—until everyone with these sleep disorders is #BeyondSleepy.”
