Hypersomnia Education/Research
Donation protected
Idiopathic Hypersomnia, Kleine-Levin Syndrome, Narcolepsy, and Circadian Rhythm Disorders are rare neurological sleep disorders that many physicians get little to no training on. Patients go years without getting a diagnosis and when they do get a diagnosis the treatments are less than effective or there is no FDA approved treatment. For those that do have treatment options they are often unaffordable and insurance won't agree to pay for the drugs. But there is hope! We've had many exciting new discoveries just in the last couple years in sleep research.
My name is Kasha Oelke and I have Idiopathic Hypersomnia as well as a rare Circadian Rhythm Disorder called Non-24. My goal is to educate the medical field about rare sleep disorders, try to get researchers interested in doing more clinical studies, and provide a place where doctors can talk to sleep advocates and each other about rare sleep disorders and difficult cases.
Idiopathic Hypersomnia is a disorder where patients sleep 10+ hours a day, many can sleep 14-18 hours every day and yet still feel like it is not enough. Miniscule tasks like taking a shower can prove to be difficult for an IHer. Many have to take breaks during a shower and/or naps afterwards. Narcolepsy and Kleine Levin Syndrome are both sister disorders to IH. Narcolepsy involves shorter naps during the day, a hard time sleeping at night, and cataplexy. Cataplexy is involuntary momentary weakness/paralysis associated with strong emotion. KLS, also known as 'Sleeping Beauty Syndrome', has longer episodes of sleeping 18-21 hours a day that range from a week to 9 months straight and most patients resume their normal activity levels in between episodes.
I have been working with several Non-Profits in several countries as well as sleep advocates, medical professionals, researchers, patient communities, and web designers for about 6 months and it's become evident that I need a website that takes HIPAA regulations into account as well as printed materials to give to some of the Sleep Clinics. I have been unable to work for 4 years because of my comorbid sleep disorders so while I am totally willing to put in the time and effort, I would have to rely on initial donations to get a site up and running because I have no income.
The Hypersomnia Spectrum is largely underrecognized by the medical profession but ALL are disabling disorders that lead to many health problems. Many people with Narcolepsy, KLS, and IH also have Circadian Rhythm Disorders or Apnea so I'm trying to include those organizations as well. So it really is a huge project. Narcolepsy research is abundant; Hypersomnia and KLS research is not. KLS research is very slow going and usually more on an individualized basis because it's so rare. IH research for the most part up until a few years ago has not done the disorder justice because it usually was "narcolepsy and hypersomnia", not Idiopathic Hypersomnia. We finally do have some clinical trials- 2 right now in the world and 1 more upcoming trial. That's not enough. So one of THE main purposes of me creating this website is to drum up research interest and network.
I am lobbying Congress to allocate funds to sleep research on specific bills, I have worked with 3 researchers in the past month on various projects... this is all very possible. I just need your support. So please donate today!
Thank you for your time!
https://www.linkedin.com/pub/kasha-oelke/18/b68/5b7
https://www.facebook.com/groups/807925035891958/
http://www.hypersomnia.info/
My name is Kasha Oelke and I have Idiopathic Hypersomnia as well as a rare Circadian Rhythm Disorder called Non-24. My goal is to educate the medical field about rare sleep disorders, try to get researchers interested in doing more clinical studies, and provide a place where doctors can talk to sleep advocates and each other about rare sleep disorders and difficult cases.
Idiopathic Hypersomnia is a disorder where patients sleep 10+ hours a day, many can sleep 14-18 hours every day and yet still feel like it is not enough. Miniscule tasks like taking a shower can prove to be difficult for an IHer. Many have to take breaks during a shower and/or naps afterwards. Narcolepsy and Kleine Levin Syndrome are both sister disorders to IH. Narcolepsy involves shorter naps during the day, a hard time sleeping at night, and cataplexy. Cataplexy is involuntary momentary weakness/paralysis associated with strong emotion. KLS, also known as 'Sleeping Beauty Syndrome', has longer episodes of sleeping 18-21 hours a day that range from a week to 9 months straight and most patients resume their normal activity levels in between episodes.
I have been working with several Non-Profits in several countries as well as sleep advocates, medical professionals, researchers, patient communities, and web designers for about 6 months and it's become evident that I need a website that takes HIPAA regulations into account as well as printed materials to give to some of the Sleep Clinics. I have been unable to work for 4 years because of my comorbid sleep disorders so while I am totally willing to put in the time and effort, I would have to rely on initial donations to get a site up and running because I have no income.
The Hypersomnia Spectrum is largely underrecognized by the medical profession but ALL are disabling disorders that lead to many health problems. Many people with Narcolepsy, KLS, and IH also have Circadian Rhythm Disorders or Apnea so I'm trying to include those organizations as well. So it really is a huge project. Narcolepsy research is abundant; Hypersomnia and KLS research is not. KLS research is very slow going and usually more on an individualized basis because it's so rare. IH research for the most part up until a few years ago has not done the disorder justice because it usually was "narcolepsy and hypersomnia", not Idiopathic Hypersomnia. We finally do have some clinical trials- 2 right now in the world and 1 more upcoming trial. That's not enough. So one of THE main purposes of me creating this website is to drum up research interest and network.
I am lobbying Congress to allocate funds to sleep research on specific bills, I have worked with 3 researchers in the past month on various projects... this is all very possible. I just need your support. So please donate today!
Thank you for your time!
https://www.linkedin.com/pub/kasha-oelke/18/b68/5b7
https://www.facebook.com/groups/807925035891958/
http://www.hypersomnia.info/
Organizer
Kasha Oelke
Organizer
Wausau, WI
