Hypersomnia Foundation

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/.

Posted in: Awareness, CoRDS Registry, Research

Leave a Comment: (0) →

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.

Posted in: SomnusNooze

Leave a Comment: (0) →

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!

Posted in: BeyondSleepy, Conference, SomnusNooze, Uncategorized

Leave a Comment: (0) →

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.

Posted in: Ask The Doctor, SomnusNooze

Leave a Comment: (0) →

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!

Posted in: SomnusNooze

Leave a Comment: (0) →

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).

Posted in: SomnusNooze

Leave a Comment: (0) →

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.

Posted in: Share the Journey Stories, SomnusNooze

Leave a Comment: (0) →

Meet the Doctor, Doctor Lecendreux

Meet Michel Lecendreux, MD, child psychiatrist, University Hospital, Robert-Debré, Paris, France, and newest member of the Hypersomnia Foundation’s Medical Advisory Board.

For those of you who watched the Livestream or attended the Denver Regional Conference in person, you may remember Dr. Lecendreux. He gave a fascinating presentation on what hypersomnia looks like in children and adolescents and told us that hypersomnia is often unrecognized and undiagnosed. He also shared some of his research findings, which indicate that many of these children and adolescents have emotional difficulties, have behavioral or cognitive problems (attention deficit hyperactivity disorder–ADHD–symptoms), have decreased academic performance, become loners, and avoid athletic activities.

Dr. Lecendreux is involved in pediatric sleep research, and he also cares for children and adolescents in the clinic. He is the head of the Pediatric Sleep Centre at Hospital Robert-Debré in Paris. His main fields of interests are sleep, alertness, narcolepsy, and ADHD.

Dr. Lecendreux is one of the directors of the French Reference Center for Pediatric Narcolepsy, Idiopathic Hypersomnias and Kleine-Levin Syndrome in the Department of Neurophysiology and is a member of numerous international sleep societies.

Dr. Lecendreux has written many journal articles, editorials, chapters and books in the area of pediatric narcolepsy, ADHD and sleep and is an editorial board member for the Journal of Attention Disorders. Together with his colleagues, he reported on the role of vigilance impairment in children ADHD and insisted on the role of iron deficiency in the pathophysiology of ADHD. Dr. Lecendreux is also involved in numerous activities, including teaching medicine and education and research on attention disorders at the Faculty of Medicine of Paris.

So now that you know all about Dr. Lecendreux, don’t forget to write into our Ask the Doctor column and ask him questions pertaining to children or adolescents and hypersomnia.

Posted in: SomnusNooze

Leave a Comment: (0) →

Livin’ the Dream

Livin’ the Dream

Or maybe dream living? I’ve never been a morning person. Mom would drop me off at the door by my first hour seconds before the bell rang. Neighbors that I carpooled with to grade school called me Molasses. My birth certificate says Melissa. Everyone knows I will be late to EVERYTHING.

I stay up all night cleaning because that’s when energy strikes and the fog lifts. Conversely, if I choose instead to go to bed I’ll fall asleep immediately. Mornings, and just the thought of them, terrify me. No amount of sleep, hours or days, refreshes me. I used to get up at the same time dreamwith no alarm. Now, if I hear it, it’s like a dream fragment that I’m never sure actually happened. My dad calls me every morning to help wake me up. These conversations have the same wispy, unreal quality.

The physical act of leaving the bed while my brain is wrapped in rolls of bubble wrap is the single most difficult task I have ever faced. And I’ve had 3 hip replacements and had my first surgery at 18 months old. In fact the state of my brain when trying to wake reminds me of the last second before anesthesia steals you or the first moments it lets you go. Once I leave the bed, conversation is not an option. The words may float around in my head but they ain’t coming out. So I do the hair and makeup thing, and I’ve realized that the act of making myself look awake helps me feel normal. Not less sleepy, just human.

I would give just about anything to wake up refreshed again. To look forward to going places and seeing people. My house used to look like Halloween or Christmas threw up in here. I can’t make myself just switch out summer candles for fall. Got meat in the freezer from March – July. Yeah I know, yikes! I haven’t cooked my family a real meal in months. And I have no appetite either. Anyone else have that?

So I float thru every day in this dreamlike fog, forgetting the thought I had a second ago, practically begging doctors to find something horrible wrong with me, desperately wanting sleep and hating it with a passion, as well as a body that seems to have turned on me, trying stimulants and wake-up meds, feeling like a loser for getting to the office at 11:30, forgetting to pay bills, not going to the grocery store, being too tired to give my cat her medicine, being overrun by laundry, telling my sister no I can’t take you to urgent care, throwing my hair up in a ponytail because I’m too tired to wash it, being suspicious of “good” days and cramming a million things into them because tomorrow is an unknown bitch that more than likely will kick my ass again.

 

Melissa Morrow

Oak Grove, MO

Posted in: Uncategorized

Leave a Comment: (0) →

The Hypersomnia Foundation Joins the #GivingTuesday Movement with #beyondsleepy campaign

The Hypersomnia Foundation Joins the #GivingTuesday Movement with #beyondsleepy campaign

Press Release November 29, 2016 – Today The Hypersomnia Foundation, Inc., the leading hypersomnia advocacy and awareness non-profit, joins #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. The Hypersomnia Foundation is joining the #GivingTuesday movement to raise awareness and monies for research that will be restricted to study Idiopathic Hypersomnia (IH), a rare, chronic neurological disorder that causes an insatiable need to sleep that is not eased by a full night’s slumber, as part of the Let’s get #beyondsleepy campaign.

In a society where feeling tired is the norm, it can be difficult to comprehend the devastating impact of the disorder, which causes sleep inertia (extreme difficulty making the transition from sleep to waking), and mental fogginess even during the few hours a day people with IH can remain awake. Many with the disorder sleep up to 11 hours out of 24. The relentless nature of the disorder makes it extremely challenging for people with IH to hold down jobs, remain in school, maintain marriages and fully engage with their family and friends. Hence this year’s call to action: Let’s Get #beyondsleepy

“We are pleased to offer this opportunity to our supporters so that they can help in the quest to understand IH more fully,” said Cate Murray, CEO of the Hypersomnia Foundation. “We understand the struggle that individuals and their families are going through living with this little-known and devastating disorder and how crucial future research is to them.”

Why raise awareness of and restricted funds for research for Idiopathic Hypersomnia (IH)?  

  1. We don’t know how many people have Idiopathic Hypersomnia (IH) which is vital for scientists to apply for grants and encourage pharmaceutical companies to study IH. The first step towards having this number is building awareness of the disorder. 
  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 – making further research imperatives.
  3. The tests that we do have are often inaccurate and repeating them is very expensive. 
  4. There is no FDA approved treatment. While wakefulness-promoting medications are sometimes prescribed, ”off-label”, these medications don’t work well for everyone and they may also stop working overtime and/or have bothersome side effects.

Get involved and learn more at http://www.hypersomniafoundation.org/2016givingseason/  Share Let’s Get #beyondsleepy on Social Media on #GivingTuesday, November 29, 2016 and throughout the giving season.

About Hypersomnia Foundation 

The Hypersomnia Foundation, Inc. strives to improve the lives of people with idiopathic hypersomnia 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, a cure for these debilitating conditions.

To find out more about IH and related disorders, please visit http://www.hypersomniafoundation.org/or follow us on Twitter at or on Facebook.

About #GivingTuesday 

#GivingTuesday is a movement to celebrate and provide incentives to give—the 2016 iteration will be held on November 29, 2016. This effort harnesses the collective power of a unique blend of partners—nonprofits, businesses and corporations, as well as families and individuals—to transform how people think about, talk about and participate in the giving season. #GivingTuesday inspires people to take collaborative action to improve their local communities, give back in better, smarter ways to the charities and causes they celebrate and help create a better world. #GivingTuesday harnesses the power of social media to create a global moment dedicated to giving around the world.

 

For more information, please contact:  

Diane Powell, Board of Directors
Hypersomnia Foundation, Inc.
diane@hypersomniafoundation.org
267-629-9250

 

Posted in: HF Press Release

Leave a Comment: (0) →
Page 3 of 14 12345...»