Hypersomnia Foundation

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Dear Abby Misses the Mark on IH

A “Dear Abby” advice column was recently forwarded to us by Noelle, a member of the hypersomnia community. In a letter to Abby, a mother in New Jersey asked what to do about her teenaged son’s complete inability to get himself up for school in the morning. She said he is a responsible boy in every other way, but she fears he won’t be able to get to class when he starts college this fall. Unfortunately, Abby’s advice reflects the widespread lack of awareness of sleep disorders. But we viewed it as a golden opportunity to educate “Abby,” the public, and we hope, the mother of that young man.

The Hypersomnia Foundation, working with Dr. David Rye of Emory University, co-wrote and submitted a reply which we hope will be published. We have not yet heard back from the writers of “Dear Abby,” but we’ve decided to share the story here, in hopes that you will share it, too. (We did manage to get our letter posted on the Abby Facebook page.) Below is a link to the original letter, followed by our response. (Warning: Many readers will find the original letter and the Abby reply upsetting. We certainly did.) Our thanks to Noelle for bringing this to our attention.

The original column:

http://www.pressdemocrat.com/lifestyle/6726470-181/dear-abby-mom-cant-get

Dear Abby: Mom can’t get teen to wake up on his own
JEANNE PHILLIPS
DEAR ABBY | March 11, 2017

Dear Abby: My son “Jake” is headed to college in the fall, and I want his last year at home to be memorable and happy. He’s a good student and has been admitted to the college of his choice. The problem is, he can’t wake himself up in the morning. He switches off the alarm and goes back to sleep. I must go up to his room several times to wake him because he won’t get up the first time.

Jake is otherwise independent. He does his own laundry and keeps his room spotless. I’m spending a large part of my savings on his tuition, and I’m worried that unless he can wake himself in the mornings, he won’t get to classes on time.

I have tried talking to him about putting the alarm on “snooze” instead of turning it off, but nothing works. My husband suggests we pour a glass of cold water on Jake’s face 10 minutes after the alarm goes off. Can you help us solve this problem?

— Up Already in New Jersey

Dear Up: Although you may think your husband’s suggestion is harsh and inappropriate, it’s time you stopped coddling your son. The two of you need to sit him down and tell him that college is expensive, that if you and your husband are willing to go through the financial hardship of paying for it, he must wake up by himself and if he cannot manage to do that, he will have to pay for his own education. Perhaps that will get across to him that you are serious.

Our reply to “Abby”:

March 22, 2017

Dear Abby,

As soon as we read your reply to “Up Already in New Jersey,” we were compelled to respond. A mother wrote to you about her teenaged son, a good student and responsible young man, concerned that his inability to awaken in the morning would prevent him coping with the demands of college. You scolded her for coddling him, and didn’t disagree with her husband’s suggestion that she consider throwing cold water in her son’s face.

Abby, difficulty waking up may be a signal of serious medical conditions (e.g., low thyroid hormone levels, iron deficiency with or without anemia, and others). It may also be a symptom of certain poorly recognized primary sleep disorders. While adolescents have a natural propensity towards being “night owls,” long and unrefreshing sleep can be an indication of a more serious neurological disorder such as idiopathic hypersomnia or narcolepsy. The inability to awaken to a standard alarm is, for instance, one of the hallmark symptoms of idiopathic hypersomnia. Affected individuals will often resort to ‘sonic-boom’ alarms and other extraordinary means to awaken. Other symptoms may include disorientation after awakening, grogginess, ‘brain fog’ and an inability to remain alert during the day. That concerned mother would be well advised to seek the opinion of a board certified sleep medicine physician.

In a society where feeling tired is increasingly expected, and accepted, people with sleep disorders are often mistaken as unmotivated or lazy. It is truly heartbreaking how many people with a sleep disorder suffer for years before getting a proper diagnosis. If this mom’s teen has a medical or (un)recognized sleep disorder, throwing cold water in his face will not help. New Jersey mom’s son will need his parents’ guidance to sort out how to best evaluate and manage a condition that might affect his schooling, his work, and his relationships. New Jersey mom may also want to view online – free of charge – a discussion panel led by two students who have successfully navigated college with their diagnoses of idiopathic hypersomnia. It’s scheduled as a live webcast on June 4th, as part of the Hypersomnia Foundation’s conference in Boston, MA – anyone can go to www.hypersomniafoundation.org to register.

Sincerely,

Diane Powell, LCSW
CEO / Board Chair
The Hypersomnia Foundation

David B. Rye M.D., Ph.D.
Professor of Neurology, Emory University School of Medicine
Chair, Scientific Advisory Board Hypersomnia Foundation

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Hypersomnia on CNN

Set your DVRs, check it out live, or catch a sneak peak, but don’t miss this program on sleep and idiopathic hypersomnia on CNN! Dr. Sanjay Gupta not only undergoes a Multiple Sleep Latency Test at Emory Sleep Lab, but also discusses idiopathic hypersomnia and its treatment with Dr. David Rye and Danielle Hulshizer. This episode of Vital Signs will air live on Saturday, April 25, 2015, at 3:30 PM EDT and again on Saturday, May 9, 2015, at 3:30 pm, EDT on CNN. In the meantime, you can watch the segments online by clicking on the following links.

PART 1: How important is a good night’s sleep?

PART 2: Tired all the time?

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A Real-Life Sleeping Beauty

This episode of the Today Show, which originally aired on November 20, 2012, offers a glimpse into the sleep-filled life of Nicole Delien, a 17-year-old with Kleine-Levin syndrome, and provides an interview with the physician who diagnosed her disorder, Dr. Michael Rancurello.

Visit NBCNews.com for breaking news, world news, and news about the economy

 

 

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Emory Researchers Announce Discovery of Substance That May Be Linked to Excessive Sleeping

In a paper published in the November 21, 2012, edition of Science Translational Medicine, Dr. David Rye and a team of researchers from Emory University announced their discovery of a substance in the cerebrospinal fluid of 32 people with idiopathic hypersomnia that may be responsible for their relentless need to sleep. For now, the researchers are simply referring to this substance as a somnogen (or sleep-producing agent), which appears to heighten the effect of GABA when tested in the laboratory. Seven of the research subjects with idiopathic hypersomnia subsequently received flumazenil under experimental conditions and experienced normal levels of alertness.

 Rye DB, Bliwise DL, Parker K, et al. Modulation of vigilance in the primary hypersomnias by endogenous enhancement of GABAA receptors. Sci Transl Med. 2012 Nov 21;4(161):161ra151. The paper is available free of charge after registering on the AAAS web site.

 Greg Miller, science writer for AAAS, summarized the findings of the paper in ScienceNow in “Putting Themselves to Sleep.

 An Editor’s Summary of Dr. Rye’s paper, “Awake and Refreshed,” was published simultaneously in Science Translational Medicine.

The announcement of this groundbreaking work resulted in a great deal of media coverage in November 2012, some of which is linked below.

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