Premier Hypersomnia Conference to be Hosted in Atlanta, GA

7af938a36dc55a12c61e720c788795f3Saturday March 8th 2014 Living With Hypersomnia is holding the first ever conference 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 Narcolepsy with shared symptoms like Excessive Daytime Sleepiness, although Idiopathic Hypersomnia does not share the symptom of cataplexy and most patients do not experience REM symptoms either. 

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: https://www.smore.com/5dtt

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.  

5 Comments

  1. Jill on February 15, 2014 at 3:28 am

    So exciting!

  2. Beth on February 15, 2014 at 11:48 am

    Thank you for support and helping to spread the world about the first ever Living with Hypersomnia conference. People like you and events like this add validation and hope — two important elements for those living with hypersomnia.

  3. Cat Rye on February 15, 2014 at 1:04 pm

    The one day conference will be informative and fun.

  4. Joan on February 15, 2014 at 3:06 pm

    We are all very excited about this conference! Not only will be get the latest research and treatments but we will also be able to meet others who suffer from this rare condition! Many Idiopathic Hypersomnia patients feel alone in their struggles with this disease. To actually meet others who completely understand what you are going through is very powerful. Thank you for spreading the word!

  5. Ann charnley on February 18, 2014 at 3:59 pm

    I can hardly dare believe a Hypersomnia conference is happening. It took me 11years to convince my neurologist I as not tired I was sleepy.

    Those were the times when no one was really focusing on hypersomnia patients. My sleep doc prescribed “two, maybe three short naps during the day” That was the sum of his treatment recommendations

    I am more than grateful to Dr. Nye’s and his colleagues, because we HS patients know there are a lot more of us out there struggling to get the right disgnosis and treatment.

    My hypersomnia followed post-traumatic Syringomyelia. I hope to meet any Syringomyelia patients that may be attending.

    Finally I live on an island (Martha’s Vineyard) year round, so my sense of isolation makes me doubly excited about meeting other HS.

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