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Living With Hypersomnia Conference
Lloyd Johnson and I had the pleasure of crossing paths in early 2013. Lloyd has a similar sleep disorder as Kleine-Levin Syndrome (KLS), called Idiopathic Hypersomnia. We have been able to lean on each other for support and I am proud to call him my friend. Lloyd is very involved in the Idiopathic Hypersomnia community and he and some community members have created the first ever Living With Hypersomnia Conference!
The conference will be held in Atlanta, GA: Saturday March 8th dedicated to Idiopathic Hypersomnia. Topics covered will include the latest research into this condition, emerging treatments and sessions to help people cope with this disorder. The one-day conference being held at the Atlanta Airport Marriott Gateway Hotel from 9AM to 4PM has already attracted over 100 attendees from as far away as Australia. Attendees include patients, their supporters, medical researchers, and members of the pharmaceutical industry.
Idiopathic Hypersomnia is a debilitating condition where a patient sleeps over ten hours per day due to a neurological disorder. While onset is generally prior to the age of 25 it routinely takes up to a decade for new patients to be diagnosed. Patients’ brains are believed to produce endogenous chemicals that have the same effect as a continual dose of sleeping tablets. This progressive condition often leads to an inability to work, drive, socialize or even support their family. Idiopathic Hypersomnia is similar to Kleine-Levin Syndrome (KLS) with shared symptoms like Excessive Daytime Sleepiness, although Idiopathic Hypersomnia is more constant and while their sleepiness is often less severe, they don’t have the reprieve between episodes like people with KLS do.
Diana Kimmel, organizer of the Living With Hypersomnia Conference said, “When this conference was originally announced we hoped to attract 30 attendees – the response has far exceeded our expectations and just reinforces how many patients are without adequate support or treatment. The keynote speaker, Dr. Rye from Emory University, has given so many patients hope that they might get better and I think that is what has attracted them to this conference”.
There are still a limited number of tickets available for this conference. For further information and to secure your ticket please visit the link below:
About Living With Hypersomnia: Living With Hypersomnia is a patient run organization for patients and supporters of those with Idiopathic Hypersomnia. Started in Australia it primarily exists via a website, www.livingwithhypersomnia.com, and Facebook Group. Founded in November 2012 it has quickly grown to 1,100 members. The primary goal of Living With Hypersomnia is to empower patients with the latest research into this condition and equip them to seek proper treatment from their health care providers.
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