Hypersomnia Foundation

World Sleep Day: Battling the Symptoms of Idiopathic Hypersomnia

 

 

World Sleep Day, an annual event, is a call to action by delegates from around the world to raise awareness about the many burdens of sleep problems and their prevention and management. This year WSD falls on Friday, March 17, 2017, and the slogan is “Sleep Soundly, Nurture Life.”

While this slogan aligns with many sleep disorders that are modifiable and manageable with the help of a sleep specialist encouraging good health, exercise and proper diet, there is unfortunately a class of central disorders of hypersomnolence (CDH), including idiopathic hypersomnia (IH), that is especially complex and more difficult to diagnose and treat.

On this World Sleep Day 2017, the Hypersomnia Foundation is working to raise awareness about IH, a chronic and often debilitating neurologic disorder, by releasing a summary of a recent review article about CDH. This summary is intended to make current research about these disorders more accessible to the public, and it is part of an ongoing series of journal article summaries provided by the Hypersomnia Foundation to increase awareness of IH and the related CDH.

Read the Article Review Here!

In a society where feeling tired is the norm, it can be difficult to comprehend the devastating impact of a malady in part defined by excessive daytime sleepiness. For people with idiopathic hypersomnia, a full night’s slumber has no effect on easing the insatiable need to sleep. The associated severe sleep inertia and mental fogginess make it extremely difficult for people with IH to hold down jobs, remain in school, maintain marriages, and fully engage with their family and friends.

As one person with IH insightfully described it, “I am like a soldier on a daily mission; I fight to stay awake and alert, but I lose the battle and retreat to bed.” The Hypersomnia Foundation is working to help those with IH win more battles. Together, let’s get #beyondsleepy!

 

A Short Bio of the HF

The Hypersomnia Foundation, Inc. (HF), established in 2014 as a public nonprofit in the USA, received its IRS 501(c)3 determination letter that same year. As an all-volunteer organization, the HF uses 100% of donated funds to support its mission of improving the lives of people with idiopathic hypersomnia (IH) and related disorders by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, cures for the debilitating conditions that comprise IH.

The reach of the HF is international, although the vast majority of our constituents are in the United States. Presently there is a serious unmet clinical need for people with hypersomnia (PWH). Not only are approved or even universally effective treatments not available, but lack of recognition that the symptoms of hypersomnia comprise a neurologic sleep disorder leads to a delay in diagnosis and years of needless suffering. As one prominent sleep researcher recently said, “People with hypersomnia are the most underserved population in the entire sleep community. They are veritable orphans, lacking even the most basic needs of recognition, let alone validated diagnostic tools and effective treatment.” The emotional, vocational and financial implications of the undiagnosed and untreated physical symptoms can have a disabling impact. The HF was established to address these issues.

HF core beliefs include the following:

• All PWH deserve full and proper diagnosis and treatment.
• Optimal diagnosis and treatment derive from better knowledge.
• All of the causes of hypersomnia can be discovered and properly treated.

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Article Review: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.”

 

HF FOUNDATION - OverlapArtboard 3

 

This article reviews three central disorders of hypersomnolence (CDH), which include narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia. The main symptom patients experience in all three of these disorders is excessive daytime sleepiness (EDS), which cannot be explained by other medical conditions or by not getting enough sleep.

Article: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.” Chest. 2015 Jul;148(1):262-73. doi: 10.1378/chest.14-1304.
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694150/pdf/chest_148_1_262.pdf
Note: Terms in italics are defined in the glossary below.

 

Symptoms (See Table)

Even though the names for narcolepsy type 1 and narcolepsy type 2 sound similar, they are now thought to be quite different disorders. Narcolepsy types 1 and 2, as well as idiopathic hypersomnia, show overlapping symptoms. Nearly all patients with narcolepsy type 1 experience cataplexy (the sudden loss of muscle tone in response to a strong emotion, often when hearing or saying something funny). These patients have difficulty with not only staying awake during the day but also with staying asleep during the night. It is also very common for patients with narcolepsy type 1 to experience sleep paralysis and hallucinations.

On the other hand, patients with narcolepsy type 2 do not experience cataplexy, but also have difficulty with daytime wakefulness. Just as in narcolepsy type 1, it is also common for patients with narcolepsy type 2 to experience sleep paralysis and hallucinations.

Patients with idiopathic hypersomnia have difficulty with daytime wakefulness, and they do not experience cataplexy.  Conversely, to narcolepsy type 1, patients with idiopathic hypersomnia do not have problems with staying asleep during the night and only sometimes experience sleep paralysis and hallucinations. They also commonly experience sleep drunkenness.

 

Prevalence and Pathophysiology (Contributing Factors)

The prevalence of narcolepsy type 1 is 0.025-0.05% of the world’s population, whereas the prevalence of idiopathic hypersomnia is not presently known. Both narcolepsy and idiopathic hypersomnia usually first occur when patients are in their teens to 30s.

Patients with narcolepsy type 1 have low levels of hypocretin (also called orexin). Hypocretin is a substance produced in the brain that is involved in regulating many processes, including sleep, feeding, stress response, and reward. These low hypocretin levels are probably due to both environmental exposure and inherited genetic factors. Getting an infection may also cause narcolepsy to develop. For example, narcolepsy became three times more common in China after an outbreak of the H1N1 flu virus.

Although several studies have investigated factors that may contribute to the development of narcolepsy type 2 and idiopathic hypersomnia, it is currently unknown whether environmental exposures or genetic factors contribute to these disorders.

 

Diagnosis

Three months of EDS symptoms are necessary for a diagnosis of all three central disorders of hypersomnolence. For narcolepsy type 1 to be diagnosed, the patient must show either or both of the following: (1) they must have cataplexy, fall asleep in an average of eight minutes or less during naps on a daytime sleep study (MSLT), and enter into rapid eye movement (REM) sleep for at least two out of five naps during this sleep study, and/or (2) have low hypocretin levels.

For narcolepsy type 2 to be diagnosed, patients must also fall asleep in an average of eight minutes or less and enter into rapid eye movement (REM) sleep for at least two out of five naps during the MSLT. They must also not have cataplexy, have normal (or unknown) hypocretin levels, and their symptoms must not be explained by any other causes.

For the diagnosis of idiopathic hypersomnia to be made, patients must not have cataplexy, must enter into REM sleep fewer than two out of five naps during the MSLT, and their symptoms must not be explained by any other causes. Additionally, they also must show either or both of the following: (1) they must fall asleep in an average of eight minutes or less during the MSLT, and/or (2) they must sleep at least 660 minutes (11 hours) per day (either in a 24 hours sleep study or in a week of at-home monitoring).

 

Treatment and Conclusions

The main goal of treating patients with all three central disorders of hypersomnolence (narcolepsy types 1 and 2 and idiopathic hypersomnia) is to relieve EDS. There are several medications approved by the US Food and Drug Administration (FDA) to treat narcolepsy. There are none, however, approved by the FDA to treat idiopathic hypersomnia, so the medications approved for narcolepsy are often used “off-label” to treat these patients.

One of these medications, modafinil, has been shown to help patients with idiopathic hypersomnia. Modafinil is unlikely to be abused, but it can cause several unpleasant side effects, like headaches and nausea. Other medications used to treat the central disorders of hypersomnolence include amphetamine stimulants, such as methylphenidate (Ritalin) and dextroamphetamine. These can also help decrease EDS, but they have associated cardiovascular and psychiatric side effects. Several other medications are also used to treat the central disorders of hypersomnolence (including sodium oxybate and antidepressants), and other new therapies are currently being developed.

Further studies are necessary to develop better diagnostic tests and treatment, especially for patients who do not respond well to medication. Additional research is also important to better understand the underlying causes of these disorders.

 

Glossary:

Excessive Daytime Sleepiness (EDS): ““The inability to stay awake and alert during major waking episodes of the day, resulting in periods of irrepressible need for sleep or unintended lapses into drowsiness or sleep.” (1)

Sleep drunkenness: “A prolonged state after awakening in which motor functions return before full awareness or there is partial return of both.” (1)

Rapid eye movement (REM) sleep: “One of the four stages of sleep. During REM sleep, the eyes move rapidly while closed and dreams occur (2).”

MSLT: The multiple sleep latency test (MSLT) measures how quickly you fall asleep in a quiet environment during the day. The MSLT typically consists of five scheduled naps, each nap opportunity lasting 20 minutes, separated by two-hour breaks. During each of the nap opportunities, you lie in bed in a darkened quiet room and try to go to sleep. The time that it takes you to fall asleep is called the sleep latency. You will be allowed to sleep for a maximum of 15 minutes during each opportunity (You will be awakened if you don’t wake up on your own). If you do not fall asleep within 20 minutes, the nap trial will end.

References:

American Academy of Sleep Medicine. International classification of sleep disorders: diagnostic and coding manual. 3rd ed. Westchester, IL: American Academy of Sleep Medicine; 2014.)

  1. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0023519/

 

 

 

 

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Rare Disease Day: Research Brings Hope – My CoRDS Experience

Research Brings Hope – My CoRDS Experience

On February 28, 2017, the Hypersomnia Foundation (HF) joins with all those participating in Rare Disease Day supporting the slogan, “Research Brings Hope to People Living with a Rare Disease.”

On Rare Disease Day, through social media and our SomnusNooze newsletter, the HF once again encourages the entire hypersomnia community, including anyone with a central disorder of hypersomnolence (idiopathic hypersomnia, narcolepsy type 1, narcolepsy type 2, and Kleine-Levin syndrome), to help us get #BeyondSleepy by registering and completing the CoRDS registries. This is also a perfect opportunity for those who have already completed the registry to consider reviewing and updating their information if needed.

“When the CoRDS Hypersomnia Foundation patient registry debuted last year, I was incredibly excited about the opportunity to personally contribute to primary hypersomnia research. As a person with Idiopathic Hypersomnia, my energy, especially my cognitive energy, is extremely limited. This can make tasks like filling out a registry database quite difficult. However, it’s exactly the severity of my symptoms and the lack of effective treatments for and knowledge about the primary hypersomnias that make this registry so necessary.

Thankfully, the registry is set up so that you can easily complete it in small pieces, taking breaks whenever you need. You can even skip questions and come back to them later (just make sure you note the question number). Check out more helpful tips and FAQ at http://www.hypersomniafoundation.org/registry/.

I strongly encourage every single person with Narcolepsy, KLS, and Idiopathic Hypersomnia to push through their brain fog/sleepiness/exhaustion and prioritize contributing to this critically important database. Together we can dramatically increase knowledge of and treatment options for these devastating illnesses.”

Michelle E.

CoRDS is a centralized international patient registry for all rare diseases and has partnered with the NIH’s GRDR (Global Rare Disease Registry) program: https://ncats.nih.gov/grdr/partners.

For researchers to make advances in understanding and treatment of hypersomnia disorders, they need data. By completing the registry questionnaire, you are making a very valuable contribution to this cause. Learn more about the registry and how to sign up here:
http://www.hypersomniafoundation.org/registry/

People who have completed the registry also have this to say about their experience:

“In preparation for completing the Hypersomnia registry survey with CoRDS, I gathered as many of my medical history documents as possible. I reviewed these documents thoroughly, so that I knew what information I had and where it could be found before beginning the survey. I found this to be incredibly helpful. The survey is a bit lengthy, so being organized and understanding my personal data beforehand allowed me to complete the questions without becoming overwhelmed. Participating in this registry is an easy and effective way for all of us to contribute valuable information for the advancement of research on Hypersomnia.”
Amy H.

“I signed up with CoRDS and did the hypersomnia registry because I knew it was important to get my information out there for the doctors and researchers who are working on finding a treatment for this horrible disease. It only took a few minutes to register, but the survey itself took quite a bit of concentration that is difficult for someone with IH. I filled it out in little bits and whenever I felt I had enough energy I would go back to fill out a few more questions. I hope that my info will help in some way. If it does, then the time and energy was worth it!”
Dustin H.

If you have any questions, difficulties, or concerns while completing the CoRDS registries, please feel free to contact them at cords@sanfordhealth.org or call 877-658-9192.

If you have completed the CoRDS registries and want to share your experiences and advice with others, you can send them to us at: http://www.hypersomniafoundation.org/understanding-hypersomnia/share-your-journey/.

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A Service Dog Can Do That?

Service Dogs – Different Types and What They Do

Many people are surprised to learn there are more than a dozen different specializations for service dogs. There are diabetic alert dogs, severe allergy alert dogs, visual assistance dogs, hearing dogs for the deaf, wheelchair assistance dogs, psychiatric service dogs, brace/mobility support dogs, medical alert dogs, seizure assistance dogs, and dogs for autism, PTSD and more.*

According to the Americans with Disabilities Act (ADA, 1990), a dog is considered a “service dog” if it has been “individually trained to do work or perform tasks for the benefit of a person with a disability.” A disability is a “mental or physical condition which substantially limits a major life activity.” Examples include the following:

  • Caring for one’s self
  • Performing manual tasks
  • Walking
  • Seeing
  • Hearing
  • Speaking
  • Breathing
  • Learning
  • Working

Other disabilities may not be visible:

  • Deafness
  • Epilepsy
  • Psychiatric conditions
  • Diabetes

To be considered a service dog, the dog must be trained to perform tasks directly related to the person’s disability. Some service dogs perform two or more functions for their disabled handler, such as a brace / mobility support dog and a seizure assistance dog. There isn’t a clear way to classify all types of service dogs, nor is classification particularly important under the ADA as long as the dog is a service dog. The dog’s type, function, title, or classification is usually left up to the dog’s handler. The following are some ways in which service dogs can assist their handlers.

Allergy Alert: The service dog can alert its handler to life-threatening allergens that may be in the area, especially tree nuts, gluten, or shellfish.

Autism Assistance: The service dog can help to calm or ground an individual who has autism via tactile or deep pressure stimulation. The dog may also assist in teaching life skills, maintaining boundaries, or finding a “runner.”

Mobility Support /Wheelchair Assistance: A brace/mobility support dog works to provide bracing or counterbalancing to a partner who has balance issues due to a disability. Many brace/mobility support dogs also retrieve, open/close doors, or do other tasks to assist in day-to- day life or in an emergency. Dogs may also assist their partner by retrieving dropped objects, opening doors, retrieving the phone, helping with transfers, or doing anything else their partner may need.

Diabetic Alert: These dogs can alert their handler to dangerous or potentially deadly blood sugar highs and lows. Many dogs are trained to call 911 on a special K-9 Alert phone if their partner cannot be roused.

Hearing Assistance: Hearing assistance dogs can alert their deaf handler to environmental sounds, including, but not limited to, alarms, doorbells, knocking, phones, cars, or their name.

Medical Alert: These dogs are trained to alert their handler to dangerous physiologic changes. such as spikes or drops in blood pressure, hormone levels or some other parameter or to recognized an identifiable symptom.

Psychiatric Service: Psychiatric service dogs assist their handler with a psychiatric disability such as anxiety, depression or PTSD via specific trained tasks.

Seizure Response: These dogs respond to their handler’s seizures via trained tasks. The dog may retrieve medication, utilize deep pressure stimulation to end a seizure early, fetch a nearby person to help or call 911.

Visual Assistance: Also know as guide dogs, these animals help their visually impaired or blind handler to navigate the world.

Kimberly Brenowitz is the Master Trainer with Animals Deserve Better, Inc., and Paws for Life in Marietta, GA. She can be reached at adb@animalsdeservebetter.com.


*Editor’s Note: Although the article above does not specifically address service animals and sleep disorders, professionally trained service animals have been reported to be able to assist people with IH, narcolepsy and related disorders. For example, a service animal may be trained to wake their owner in response to an alarm, or wake them if they are falling asleep in public. It’s possible a service animal may make sure that their owner gets to a safe place when they are overwhelmed with sleep, and helps with other tasks. Service animals can also offer comfort and calm anxiety. Of course, owning and caring for any animal is a major commitment and expense. Thorough research and careful thought on the advantages, challenges, costs and responsibilities of owning a service animal is essential.

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2017 #BeyondSleepy in Boston

Hypersomnia Foundation Regional Conference on June 4th

The Hypersomnia Foundation (HF) board is finalizing the program for its 2017 Boston Regional Conference. We will provide Eventbrite registration details in the near future via Facebook, Twitter and Somnusnooze.

Information below will help you begin making your travel plans to Boston. Read to the bottom for information on special hotel accommodations!


Conference Schedule (As always, social activities are optional):

Saturday – June 3

  • 2:00-4:00PM-Old Town Trolley Tour https://www.trolleytours.com/boston#home-section  
  • Survey responders voted the trolley tour #1 choice for our Saturday afternoon activity.  Sit back, relax and discover all that Boston has to offer by means of this sightseeing tour!  Group booking arrangements will be available through our Eventbrite once it is live, and we anticipate the per person rate will not exceed $36.00 (seating will be limited).
  • 7:30PM – Meet and Greet Game Night
  • Enjoy a casual meet and greet with light snacks and games hosted by the HF Board at the Residence Inn Boston Harbor on Tudor Wharf.This event is FREE but you will need to register once our Eventbrite is live.

Sunday-June 4

  • 1:00-4:30PM – HF Regional Conference at the historic Boston Public Library at Copley Square, 700 Boylston St., Boston, MA 02116
  • We have booked Rabb Lecture Hall in the newly renovated Johnson Building at the Boston Public Library for another fabulous regional conference featuring dynamic speakers.In this state-of-the-art facility, our outstanding speakers will cover research updates on idiopathic hypersomnia and related disorders. This year’s conference, however, will also focus on advocacy and empowerment to assist people with hypersomnia and their supporters navigate this world living with a chronic, rare disorder.

COST OF CONFERENCE ATTENDANCE – We understand Boston can be pricey. With this in mind, we have been hard at work negotiating the perfect location and space for our conference. The stars aligned and this year attendance to this event will be FREE!
Due to limited space you will need to register for the conference once the Eventbrite is live.

At this moment we are not 100% certain that Livestreaming the event will be possible, but are working diligently to identify sponsorship to help cover AV and Livestreaming costs. Watch for updates.

Hotel Accommodations – For Saturday night, June 3rd, The Residence Inn Boston Harbor on Tudor Wharf has offered a special group rate of $289.00 USD per night (plus tax) for a studio suite.   All rooms include complimentary breakfast and in-room high-speed internet access.  These discounted rooms are limited and we cannot stress enough to book early!

This Residence Inn has generously agreed to offer this same rate for a limited number of rooms for Friday (June 2) and Sunday (June 4) nights as well.

To make a reservation guests can either call 800-331-3131 to the central reservation team (be sure to mention the Hypersomnia Foundation room block) or book online through this link:

Book your group rate for Hypersomnia Foundation

With specific hotel questions please contact Dory Noll at the Residence Inn,
at 617-933-5313 and she will be happy to assist you.

Details about registration for the Saturday trolley tour and the meet and greet, as well as for Sunday’s Regional Conference will be highlighted in a future SomnusNooze once program details have been finalized.

We look forward to connecting with everyone in Boston!

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Ask the Doctor: Narcolepsy vs Idiopathic Hypersomnia

Ask the Doctor: Narcolepsy vs Idiopathic Hypersomnia:

What’s the Difference?

My 9-year-old son recently was diagnosed with IH but can’t exclude narcolepsy. We got a second opinion and the doctor agreed. I don’t understand why they don’t have a definitive answer. The doctors told me to not to worry about narcolepsy vs. hypersomnia. Can anyone help me understand the difference? And is it possible to have IH and beginning stages of narcolepsy?
Dr David Plante presenting at the Beyond Sleepy in the Mile High City Conference
Both narcolepsy and idiopathic hypersomnia (IH) are considered central disorders of hypersomnolence (CDH). They share similarities, most important of which is the requirement that patients with both disorders must experience significant excessive daytime sleepiness. From a diagnostic standpoint, sleep medicine uses the multiple sleep latency test (MSLT), a repeated nap study performed after polysomnography (PSG; an overnight sleep test), to help identify and characterize central disorders of hypersomnolence. One of the primary results of these tests used to determine whether a patient has narcolepsy or IH is based on the number of sleep onset REM periods (SOREMPs), during which individuals go into REM sleep much faster than is typical. Patients with narcolepsy have 2 or more SOREMPs on PSG/MSLT testing, where patients with IH do not.

There are differences in other clinical symptoms experienced by patients that can be used to help clarify whether a person has narcolepsy or IH. For example, patients with IH often sleep excessive amounts of time and have severe difficulty waking up after sleeping (i.e. excessive sleep inertia). Patients with narcolepsy frequently do not sleep excessive amounts of time, and may find brief naps refreshing. Many patients with narcolepsy also experience symptoms related to REM sleep instability such as sleep paralysis (waking from sleep in a paralyzed state) and hallucinations around sleep onset/offset, thought to be due to inappropriate combinations of REM sleep and waking brain function. In addition, some patients with narcolepsy experience cataplexy, the sudden loss of muscle tone in response to emotions such as laughter. Cataplexy is almost never seen outside of narcolepsy, and thus when patients have this symptom, there is high suspicion that the patient does indeed have narcolepsy.

Sometimes, the clinical history and results of PSG/MSLT testing do not neatly align. Although I do not have the specifics in the case of your son to comment definitively, it is certainly possible that the results of his sleep testing have shown he is pathologically sleepy consistent with IH, but did not have enough SOREMPs to be diagnosed with narcolepsy. He may also have clinical symptoms that are more suggestive of a narcolepsy diagnosis than IH, which is why there is some ambiguity around the diagnosis. Sometimes retesting can help clarify the diagnosis, but not always. Because initial treatment of both narcolepsy and IH often involves stimulants, oftentimes treatment is initiated for practical reasons to try to improve the patient’s symptoms, since the precise diagnosis may not alter initial clinical management, particularly in the early stages of treatment.

David T. Plante, M.D.
Assistant Professor, Department of Psychiatry
Program Director, Sleep Medicine Fellowship
University of Wisconsin School of Medicine and Public Health


Glossary of terms:

Central Disorders of hypersomnolence (CNS): As defined by the ICSD-3 rd –Include Narcolepsy Type 1, Narcolepsy Type 2, Idiopathic Hypersomnia, and Kleine- Levin Syndrome. They also include hypersomnolence caused by a medical disorder, medication or substance, psychiatric disorder and insufficient sleep disorder.

Rapid Eye Movement (REM) sleep: One of the two basic states of sleep. REM sleep, also known as dream sleep, is characterized by rapid eye movements, and more irregular breathing and heart rate compared to NREM sleep, the other basic state of sleep.

Sleep Onset REM Period (SOREMP): REM periods within 15 minutes of sleep onset, considered to support the diagnosis of narcolepsy.

Sleep Inertia: Feelings of grogginess and sleepiness that occur upon awakening that can result in impaired alertness and may interfere with the ability to perform mental or physical tasks.

Sleep Paralysis: involves the temporary inability to move, speak, or take a deep breath while falling asleep or waking up.

Hypnagogic or hypnopompic hallucinations: Sensory experiences involving the apparent perception of something that is not present, that occur at the transition from wakefulness to sleep (hypnagogic) or from sleep to wakefulness (hypnopompic). These hallucinations are typically visual in nature, but can affect other forms of sensation such as hearing or sense of touch.


 

Disclaimer for Ask The Doctor: The medical information provided is meant for educational purposes only and not as a substitute for professional medical care or advise.  Questions about a personal health condition should be discussed with your healthcare professional.

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Celebrate with the Hypersomnia Foundation

Celebrate with HF: Three Years of Awareness, Education, and Research

A message from the new CEO/Chair:

The Hypersomnia Foundation had a great year in 2016! As I look over the list of the year’s accomplishments, I am keenly aware of the tireless dedication and hours of work from the very beginning of HF, that made all this possible: from the founding three years ago through the recent leadership of Cate Murray into a growing non-profit able to achieve so much.

As I begin my term of leadership service, I feel fortunate not only to be working with an incredible Board of Directors, but to have the support of our prestigious Medical and Scientific Advisory Boards.

We also have an important resource in our Advisory and Advocacy Council (known as PAAC): volunteers who have become and will continue to be an important resource for HF’s outreach.

Finally, we are all grateful to our donors who make our work possible, and to the hypersomnia community, for your inspiration. I look forward to working with all of you as we continue on our mission to get #BeyondSleepy!

-Diane Powell

 

The Hypersomnia Foundation, Inc. (HF) is committed to increasing awareness and education about, and research for better understanding of idiopathic hypersomnia and related disorders. Together with the hypersomnia community we celebrate our third year organized as a public 501c3 charity! As an all-volunteer organization, we are proud of our accomplishments for the hypersomnia community in 2016:

  • February 29- HF participated in Rare Disease Day by publishing “A United Effort to Fuel Research on Hypersomnia” in SomnusNooze we updated milestones of the hypersomnia registry, and creating a graphic to share through social media as we prepared to launch mid-year.
  • March 6-11- National Sleep Awareness Week – We reached out to our SomnusNooze audience asking for statements about coping with hypersomnia, and received many poignant and powerful responses. The #BeyondSleepy tag-line was created and images developed to capture as FB/Twitter/LinkedIn profile pictures for sharing and spreading awareness about hypersomnia.
  • May 16–The HF responded to the NIH’s call for input as it was preparing to set its new research agenda for sleep.
  • June 10- A story about idiopathic hypersomnia was on the first page, top of the fold of the Denver Post, as we prepared to host our regional meeting in Denver. We also reached out to new and existing Health Care Providers; distributing 2,000 postcards giving information about hypersomnia, HF, and our regional meeting.
  • June 12- The HF Denver meeting far exceeded our expectations. From the quality of the speakers and their presentations to the number of attendees, and the ability to offer Livestream of the conference due to two generous grants the conference was a huge success.  Over 1500 people viewed the HF meeting via Livestream with slightly more than 70% watching from the US; the rest of the viewers were in 11 other countries, including Australia, Norway, France, the UK.
  • Also on June 12- After two years of seemingly endless revisions and input from researchers, physicians, CoRDS staff, and people with diagnosed with central disorders of hypersomnolence, the Hypersomnia Foundation Registry at CoRDS was launched. This registry, housed through CoRDS (Coordination of Rare Diseases at Sanford), will form the backbone of many future research projects to be conducted by scientists from throughout the world.  The registry will garner new insights into the disease processes and help scientists better understand differences between the various hypersomnia disorders. As of this past December, 447 people have completed the CoRDS registry; a boon to future research! Go to http://www.hypersomniafoundation.org/registry/
  • June 13-14- Three HF board members, at their own personal expense, attended the annual Associated Professional Sleep Societies (APSS) meeting in Denver to learn about the latest sleep research and clinical practices relating to hypersomnia. Numerous scientific talks and poster sessions were attended, and Board Members met young investigators interested in the study of hypersomnia.

And since June:

  • We have developed plans for a SomnusNooze feature called Ask the Doctor.  Members of our Medical Advisory Board (MAB) have graciously offered to answer general questions about idiopathic hypersomnia, as well as the other central disorders of hypersomnolence that include narcolepsy type 1 and 2 and Kleine-Levin syndrome.
  • We continue to grow our MAB – After our Denver conference we had two new physicians give a resounding “yes” to join Dr. Jason Ong and Dr. Michel Lecendreux. That brings the HF MAB to a total of eight medical healthcare professionals working in the field of hypersomnia.
  • The Hypersomnia Foundation was the recipient of a grant from the Trip Advisor Charitable Foundation to increase awareness of hypersomnia! We are most appreciative of these funds to update our website and enhance our social media presence.
  • The Hypersomnia Foundation has sought the input of a broad swath of the hypersomnia community in various ways, most notably through the launch of the PAAC: People with Hypersomnia and Advocates Advisory Council.  The PAAC was developed as a means to boost communication, gather input, and share ideas with those in the hypersomnia community. The group meets via phone once a month.

And finally…

  • The HF Scientific Advisory Board (SAB) is growing and 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. We have been building a research fund since our incorporation and continue to fundraise toward this effort.
  • SomnusNooze, our free electronic newsletter, continues — written and edited by volunteers, with all clinical/scientific information vetted by a member of the Medical Advisory Board (MAB). Delivered to over 1,445 inboxes, up 25% since the first of the year, on topics including clinical trial opportunity, summaries of scientific articles, drug and treatment updates, personal Journey Stories, coping tips, new doctor details, information on disability issues, use of service animals, and research opportunities. “Ask the Doctor” feature coming soon. Subscribe here: http://www.hypersomniafoundation.org/hypersomnia-news/somnusnooze/

As we prepare for 2017 we are excited for new opportunities to raise awareness, education and research about idiopathic hypersomnia and related disorders. We appreciate the support, feedback and great ideas from the entire hypersomnia community!

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Passing the Torch

Passing the Torch

Changing Roles at Hypersomnia Foundation

Catherine Friedrich Murray, one of the founders of the Hypersomnia Foundation, will step down from the Foundation’s Board of Directors when her term of office concludes on January 18, 2017. The Board of Directors has elected Diane Powell to assume Cate’s position as Chair. Diane, who has been a member of the Board since October 2015, says “I feel so fortunate to have had Cate’s example and her wisdom to prepare for this change. She has always been a great source of inspiration, and I know that we can always reach out to her for advice for the Hypersomnia Foundation.”

Ms. Powell, who is a licensed clinical social worker, has worked on fundraising for the Hypersomnia Foundation, including the recent “Let’s Get #BeyondSleepy” campaign, the most successful in the Foundation’s history. She is also a facilitator and liaison with the Foundation’s People with Hypersomnia and Advocates Advisory Council (PAAC), with whom the Board consults regarding the priorities and needs of the hypersomnia community.

Ms. Murray has pledged her continuing support of the Hypersomnia Foundation and recalls with great fondness the first conversation that she had with David and Cat Rye about starting the organization: “I had enjoyed my work with Dr. Rye when I was the executive director of the Restless Legs Syndrome Foundation. When he called me out of the blue almost four years ago and asked for my help, I was taken aback. Who could possibly have leaked the news that my daughter had been diagnosed with idiopathic hypersomnia just a few weeks before? But, of course he didn’t know. It was simply serendipity.”

“The past three years have been exciting, challenging, and so rewarding, as we have touched countless lives, educated physicians mom2and scientists, and helped people to understand that they are not alone in their struggles with hypersomnia. Of all that we have accomplished as an organization, and that list is long, I am most proud of the incredible research tool that I played a small part in launching, the Hypersomnia Foundation’s Registry at CoRDS. More than 500 members of the hypersomnia community have generously contributed their valuable information, and I firmly believe that this registry will change the face of hypersomnia and of hypersomnia research for decades to come.”

“There is so much work yet to do, but I rest assured knowing that the Hypersomnia Foundation is in very capable hands. I look forward to greeting old and making new friends at the regional conference in Boston in June. As I concentrate on finishing my masters in nonprofit leadership, I will never be more than a phone call or email message away.”

New Board Members

The Hypersomnia Foundation is thrilled to announce the election of two new members of the Board of Directors.

Michelle Emrich is an internal medicine physician who gave up her cherished career after being diagnosed with severe idiopathic hypersomnia in 2011. She is passionate about raising awareness of and research funds to study the primary hypersomnias and, after recently serving on the Hypersomnia Foundation’s PAAC, is excited to begin serving on the Board of Directors.

Amy Haraden is a long-time supporter of and volunteer for the Hypersomnia Foundation and is delighted to expand her role to serve as a member of the Board of Directors. Prior to being elected to the Board, she was one of the founders of the PAAC and volunteered on the Council since its inception in late 2015. Amy is an accounting analyst at TripAdvisor and a graduate of Stonehill College (BSBA) and Northeastern University (MSA).

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Sleeping Through Life: My Experience as a Hypersomniac

When I wake up, pure unadulterated panic with a side of adrenaline courses through my body as I try to make sense of the world around me: what day is it? IS IT day? Or night? What’s happened while I’ve been asleep? Have I let anyone down (agaifullsizerendern)? Did I do anything in my sleep? Did I bear the brunt of any social media pile ons? Did someone hack my social media and out me (again)? Did I sleep through any holidays or birthdays?

I’m sure you’re reading this thinking: woah, woah, woah! Don’t catastrophize! It’s alright! You just went to sleep! It’s not like the world ends every time you go to sleep! You’re right! But..you’re also wrong.

If you’re like the typical person, you do your nighttime routine (don’t we all have one?) throw on your PJs and you crawl between your sheets, so grateful for the sweet, sweet embrace of your bed. And then, ideally, you wake up 8 hours later with nothing eventful happening in between, feeling bright-eyed and bushy-tailed and ready to tackle the day….right?! Totally!

Unlike most people, when I go to bed at night, I don’t know when I’m going to wake up because I have hypersomnia (hyper = from the Greek meaning over, somnia = from the Latin meaning sleep). I need to get at least 12 hours of sleep to avoid getting sick (separate issue: dysautonomia/POTS) but I usually sleep around 14 hours a night, sometimes longer. As an infant and child I often slept 16-18 hours. My mom said that it was hard for her to do anything with my older siblings because everything had to revolve around my sleep schedule. I can’t imagine how difficult that was.

Fast forward: as a 19-year-old, I had just started seeing a guy, and my mom was supposed to come into town and I was so excited to pick her up from the airport the next day. That night I went to a party with the guy I had been seeing and the next morning I was still so tired (legitimately tired) so I took a nap at his house. My mom’s plane landed and she couldn’t get ahold of me. She was terrified. She called and she called and she called with no answer.

I finally got ahold of her over two days later. I had been asleep the whole time. I wasn’t under the influence of anything other than my own body. I was just so exhausted and not from anything I did. I felt so incredibly miserable when I saw my mom. She was truly distraught. She had contacted the police (obviously) who had told her I had probably just been having fun. The worst part of the whole thing was that this wouldn’t be the last time hypersomnia would cause me to scare or disappoint someone I loved…it wouldn’t even be the last time I did it to my mom. I slept through Thanksgiving when it was just the two of us and she was waiting for my call.

Hypersomnia is letting people down. It’s missing out on life. It’s sleeping through classes and exams and not being able to tell your professors what’s going on because they won’t understand and when you’ve tried in the past to be open and honest it’s backfired. Hypersomnia is depression, anxiety, stigma and people being afraid to talk about those things because maybe they’re afraid of being mentally ill and further marginalized by the medical community (and maybe there’s some internalized ableism there, too). It’s sleeping through your cat’s insulin…and earthquakes…and fire alarms. It’s sleeping so long that when you try and eat you get sick because your body has gone without food and water for so long. Hypersomnia is missing out on the things that matter MOST to you, the moments you can’t get back, with people who are now gone forever…and having to reconcile that with yourself and the ones who are still here. Hypersomnia is brain fog and sleep inertia. It’s having trouble telling what happened when you were asleep and what happened when you were awake (the blurring of dream and reality.) Hypersomnia is disability for some of us and impacted relationships for most.

Hypersomnia feels like going under general anesthesia. It’s like being drugged. When the feeling takes hold of you you can’t fight it. It’s like being dragged under water when you can’t swim and you’re tired of trying to pretend you can, you’ve spent so much time and energy pretending you can.

Yes, I spend my life sleeping. But… at the same time I spend my life dreaming, and a lot of the time, I spend my life dreaming of beautiful things, fantastical things, hopeful things.


Jennie Murray is the author of JourneyOfIsaJennie.Wordpress.Com where she blogs about a wide variety of issues. All views are her own.

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