Jun 29, 2017

Investing in future understanding of IH

I can't wake up
I can't wake up

An insatiable need to sleep that is not eased by a full night’s slumber is one of the debilitating effects of a rare, chronic neurological disorder called idiopathic hypersomnia.  In a society where feeling tired is the norm, idiopathic hypersomnia is often unrecognized or misdiagnosed by medical professionals, as well as misunderstood by family members, employers, and society in general.

Here is Lydia's story:

Most of my friends know I have idiopathic hypersomnia (IH) – it isn’t a secret. And most have heard me talk about the challenges I face because of this neurological disorder. They know I struggle every day to get out of bed. And I don't mean it takes me a minute to fully wake up – I literally do not obtain wakefulness. Ever. I may look awake but my brain is constantly encased in fog, often struggling to remember even the simplest of things.

They’ve heard me explain IH as the equivalent of a "normal person" being awake for 48 hours, falling asleep, and then having someone wake them an hour later. That is my reality. Every. Day.

And they’ve heard me say that there are no FDA-approved medications for IH, let alone a cure. Most folks with IH, including myself, have fought to get insurance approval to cover medications that are only FDA-approved to treat narcolepsy. Even with coverage, just one of my prescriptions costs over $500 a month. And there's a stigma that comes along with taking these medications – most of them are highly controlled substances. I've been through almost every narcolepsy medication out there and I can tell you the side effects aren't any fun, either. From dropping tens of pounds in a matter of weeks on Adderall to falling asleep and smashing my head in to the wall on Xyrem, it has been a wild ride. That's why awareness is so important – we desperately need research and funding.

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The Scientific Advisory Board (SAB) of the Hypersomnia Foundation is raising awareness among researchers about hypersomnia and is working on an accelerated plan to begin the process of attracting the most promising research applications. The time of launch will depend upon raising funds to support a sustainable research program that will attract innovative investigators in the area of hypersomnia.

Why raise restricted funds for research for idiopathic hypersomnia?

  1. We don’t really know how many people have IH. This number is vital for scientists to apply for grants and so that we can encourage pharmaceutical companies to study IH.
  2. We don’t have a biomarker, a substance in the body, such as blood or spinal fluid that can tell us whether or not a person has IH.
  3. The tests that we do have are often inaccurate and repeating them is very expensive.
  4. No drugs have FDA approval for the treatment of IH.
More Research Needed
More Research Needed

Links:

Mar 20, 2017

Research and awareness update

Dr. Trotti
Dr. Trotti

The Scientific Advisory Board (SAB) of the Hypersomnia Foundation (HF) continues to develop a plan that includes raising awareness about hypersomnia among clinical and basic science researchers.  Dr. David Rye, Chair of the SAB, for example, recently presented updated information about hypersomnia at the North Carolina Academy of Sleep Medicine Conference in Raleigh, NC., at the Board of Registered Polysomnographic Technologists Symposium in Atlanta, and will be speaking March 25 at the Southern Sleep Society Meeting in Houston, TX.

Aligning with this plan of awareness Dr. Lynn Marie Trotti, Chair of  the Hypersomnia Foundation's Medical Advisory Board , discusses advances in diagnostics of, and treatment for, hypersomnia.  Dr. Trotti will be presenting this information at the American Academy of Neurology conference in Boston, April 2017.

The HF continues to promote the Hypersomnia Foundation's registry housed at CoRDS (Coordination of Rare Diseases at Sanford).  Over 500 people with a central disorder of hypersomnolence (idiopathic hypersomnia, narcolepsy types 1 and 2, and Kleine-Levin syndrome)  have successfully completed this registry.

Another key component of this plan is a grants program that will financially support innovative research applications that are most likely to positively impact the hypersomnia community. Announcement of this program to the scientific community will depend upon having funds in hand sufficient to attract the best science as well as sustain this initiative. We continue raising funds to insure a vibrant funded research program.

Dr. Rye
Dr. Rye

Links:

Dec 20, 2016

Investing in the Future for People with IH

Awareness and Research key to understanding IH
Awareness and Research key to understanding IH

An insatiable need to sleep that is not eased by a full night’s slumber is one of the debilitating effects of a rare, chronic neurological disorder called idiopathic hypersomnia (IH). In a society where feeling tired is the norm, IH is often unrecognized or misdiagnosed by medical professionals, as well as misunderstood by family members, employers, and society in general.

IH often strikes people in the prime of their lives. No US Food and Drug Administration-approved treatments exist, although wake-promoting medications are sometimes prescribed "off-label."

Unfortunately, these medications don’t work well for everyone, and most stop working over time or have bothersome side effects. Even when medications do help people with hypersomnia stay awake during the day, they may not help with other symptoms of IH, such as extreme difficulty making the transition from sleep to waking (called sleep inertia or sleep drunkenness) that can negatively impact mental and physical tasks and often manifests as cognitive dysfunction. The relentless nature of the disorder makes it extremely difficult for people with IH to hold down jobs, remain in school, maintain marriages, and fully engage with their family and friends.

The Scientific Advisory Board of the Hypersomnia Foundation is creating a plan to raise awareness about hypersomnia among clinical and basic science researchers. One key component of this plan is a grants program that will financially support innovative research applications that are most likely to positively impact the hypersomnia community. Announcement of this program to the scientific community will depend upon having funds in hand sufficient to attract the best science as well as sustain this initiative. There are multiple reasons that we need to fund research for IH:

  1. We don’t really know how many people have IH. This number is vital for scientists to apply for grants and so that we can encourage pharmaceutical companies to study IH.
  2. We don’t have a biomarker—a substance in the body, such as blood or spinal fluid—that can tell us whether or not a person has IH.
  3. The tests that we do have are often inaccurate, and repeating them is very expensive.
  4. No drugs have US Food and Drug Administration approval for the treatment of IH.

Links:

 
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