Hypersomnia Foundation--Awareness and Education
Organization | Hypersomnia Foundation, Inc. |
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Region | United States |
Website | Website |
ProjectLeader | Diane Powell |
Linked Problems & Solutions
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The effects of Idiopathic Hypersomnia (IH), a rare, chronic, neurological disorder, leave one with an insatiable need to sleep, along with other symptoms such as sleep inertia and sleep drunkenness. The relentless nature of the disorder negatively impacts mental and physical tasks, including holding a job, going to school, and maintaining relationships. The HF is dedicated to increasing awareness of this disorder, and to finding more effective treatments (and, hopefully, someday a cure).
Challenge
Idiopathic hypersomnia is a rare sleep disorder about which little is known. There exists a need to educate both the pubic and the medical community about its characteristics, so patients can be diagnosed more quickly. (Currently there is, on average, a 7-year gap from initial symptoms to correct diagnosis.) Further, many primary care physicians and other doctors have not heard of this disorder, so one goal is to increase awareness within the medical community itself.
Long-Term Impact
Improved awareness of IH is essential in changing the time from onset to a proper diagnosis, as well as encouraging researchers and pharmaceutical companies in developing more effective diagnostic tools and treatments.
References
- http://www.hypersomniafoundation.org
- http://www.hypersomniafoundation.org/2018hfconf/
- http://www.hypersomniafoundation.org/about-idiopathic-hypersomnia/
- http://www.hypersomniafoundation.org/get-our-brochure/
- http://www.hypersomniafoundation.org/join-the-patient-registry/
Additional Documentation
https://www.globalgiving.org//pfil/22885/projdoc.pdf
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