Category: "Narcolepsy/Cataplexy"

Narcolepsy Careline

Link: https://narcolepsy.pafcareline.org/

Narcolepsy patients now have somewhere to turn for assistance. Created by an organizational partnership between Jazz Pharmaceuticals and Patient Advocate Foundation, this program is designed to help all patients who need assistance when dealing with the complications of a narcolepsy condition.

If you have been diagnosed with narcolepsy, the Narcolepsy CareLine is here to help you navigate the insurance and medical world as it relates to your diagnosis. This line is staffed by caring and knowledgeable case management specialists who will work with patients and their providers to ensure better access to care, help find solutions for medical debt crisis and assist in employment related issues. Now, narcolepsy patients have a partner on their side to guide them through the complex insurance and reimbursement system, allowing them to focus on living the happy and healthy life they deserve.

"AWAKEN" Survey Findings

Link: http://investor.jazzpharma.com/phoenix.zhtml?c=210227&p=irol-newsArticle&ID=1704297

"AWAKEN" Survey Finds Only 50 Percent of Americans Understand Significant Health Impact of Narcolepsy, and Many Physicians Not Comfortable Diagnosing the Sleep Disorder

Despite serious nature of narcolepsy, Americans also misperceive its severity compared to other diseases of similar health concern or prevalence

Specific findings from the AWAKEN Survey reveal:

  • Seventy percent (70%) of adults have heard of narcolepsy – the lowest percentage among a range of diseases, including diabetes, sleep apnea, Alzheimer's, Parkinson's, multiple sclerosis, schizophrenia, restless leg syndrome and cystic fibrosis.
  • Of those adults who have heard of narcolepsy, only 7% consider themselves "very or extremely knowledgeable" about the disorder.
    Similarly, only a quarter (24%) of PCPs and nearly two-thirds (62%) of sleep specialists consider themselves "very or extremely knowledgeable" about narcolepsy compared to the other diseases.
  • Even sleep specialists may not fully recognize the symptoms of narcolepsy, with only a fifth (22%) identifying all five symptoms of the disease – excessive daytime sleepiness, cataplexy (sudden loss of muscle tone), sleep paralysis, hypnagogic hallucinations and disruptive nocturnal sleep.
  • Additionally, 22% of sleep specialists report they are "not very or not at all comfortable" diagnosing narcolepsy.
  • Among PCPs and sleep specialists who see three or more narcolepsy patients a month, narcolepsy is still one of the least discussed topics compared to other sleep-related disorders – higher only than sleep paralysis. Other sleep-related conditions surveyed include insomnia, obstructive sleep apnea, excessive daytime sleepiness, restless leg syndrome/periodic limb movement disorders and hypersomnia.

The Dreamer Claims A(nother?) Victim!

Link: http://remrunner.blogspot.com/2012/04/legs-on-fire-starting-my-training-for.html

What did Julie Flygare do to deserve this? I have no idea....

She ran the Boston Marathon in 2010 for Wake Up Narcolepsy....before I knew who she was and what Narcolepsy is. But, somebody had apparently told her to be on the look out for me at the Narcolepsy Network Conference in Crystal City, Arlington, VA.... but I didn't really learn much about her until I started following her blog and other online presence after that conference.

I learned a lot at the conference, and continued to learn after the conference...including lots of stuff about myself. I'm still a work in progress. (idiopathic hypersomnia, hypnagogia, hypnic jerk, sleep paralysis, automatic behavior, long sleep, etc.)

But, back to Julie.... because I was stalking her online.... about a week and half ago, this post from a few days earlier caught my eye:

In My Father's Footsteps: Trying to Find Registration for Mt Washington Road Race to run in my father's honor on Father's Day for charity

So, I did a little research of my own.... and then wrote this blog entry on my Tumblr site: REM Runner wants to run The Northeast Delta Dental Mount Washington Road Race 2012 -- In memory of her father and to raise money for Narcolepsy Awareness and Research.

I have my Tumblr site set to tweet my posts.

Using the APA Style

LawrenceChen. (2012, Mar 25). REM Runner wants to run The Northeast Delta Dental Mount Washington Road Race 2012 - In memory of her father... http://tmblr.co/ZmWZfwIYfD1N [Twitter post.] Retrieved from https://twitter.com/#!/LawrenceChen/status/183999798339313665

Which surprisingly lead to this tweet:

NortheastDelta. (2012, Mar 27). @LawrenceChen Tom Raffio the CEO of @NortheastDelta will be contacting soon. :) [Twitter post.] Retrieved from https://twitter.com/#!/NortheastDelta/status/184740188797419520

And

NortheastDelta. (2012, Mar 27). @LawrenceChen - for clarification - we are contacting Julie re the Mount Washington Road Race :) [Twitter post.] Retrieved from https://twitter.com/#!/NortheastDelta/status/184745755431550976

Concluding with

RemRunner. (2012, Mar 27). @NortheastDelta @LawrenceChen Thank you so much! REM Runnning up a mountain for my dad would be the honor of a lifetime! [Twitter post.] Retrieved from https://twitter.com/#!/RemRunner/status/184749224636850177

And, then it seemed like an eternity passed before I heard anything further...until I spotted her "Legs on Fire" post this morning.... Guess that means my next project is to get her published &#59;D

Full story »

I went to a Narcolepsy Network Conference in Las Vegas

I was in Las Vegas, NV for the 26th Annual Patient Narcolepsy Network Conference from October 13-16, 2011 at the Stratosphere.

This is my second Narcolepsy Network conference. My first was the 25th Annual one in Arlington, VA (actually the Hyatt in Crystal City, VA)....

What led me to my first NN Conference was kind of strange. In early 2010, I first heard the N word raised in relation to my continuing EDS problem after successful/compliant management of my Sleep Apnea using CPAP (AHI was less than 1.0....closer to 0.0. In fact it was 0.0 in a PSG I had in December 2010, so sleep doc lowered my pressure so that its around 1.5 now.)

I honestly didn't really know a whole lot about Narcolepsy then, so I started researching it online. Since, I was a regular on the TalkAboutSleep message boards, and attended the Sleep Apnea chats regularly too....I started showing up to the Narcolepsy/Idiopathic Hypersomnia/Fibro chats as well.

From the chats, I feel like I've gotten to know Tracy and some of the other moderators. And, Tracy suggested a few times in chats that I check out Narcolepsy Network and its upcoming conference. With the implication that we would finally get to meet face to face if I went to the 25th one.

So, that's why I joined Narcolepsy Network and then went to the 25th Conference in 2010. Somewhere after I was committed to going, namely I had purchased my non-refundable coach airplane ticket. Tracy started saying she might not show up, and eventually it became a definite. But, she would be on for regular Thursday night N/IH/F chat....so I could do that the night before the conference from the hotel. During the chat I met Ann Austin....

At this point, I wasn't sure there was going to be any future NN Conferences for me. Since they seem to usually be second weekend in October...and doesn't line up too well with other conference/convention activities that I want to do this time of year (namely the Ohio Linux Fest...which is usually in mid-ish September, though the year I last went it was on the Columbus Day weekend....and some day I want to go again. And, Chicago TARDIS....Thanksgiving Day weekend. I actually wasn't planning to go this year [2011], but decided that I would when Alex Kingston was going to be there....she's not now, but Fifth Doctor Fest makes it still seem ok....though its missing one companion that I associate with 5, though Tony Lee kept saying at last year's Chicago TARDIS "Adric is dead"... :`( )

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Sleep Apnea disqualifies you from being a bone marrow donor?

Somebody pointed out that having Sleep Apnea disqualifies you from joining/staying in the National Bone Marrow Registry.

Even though they say 80% of marrow donations are done using an apheresis (think plasma or platelet donations)....

The explanation is:

Patient and donor safety is our top priority. Donor guidelines are developed by our Donor and Patient Safety Monitoring Committee. The committee is made up of medical directors from NMDP donor, transplant, apheresis and collection centers, a donor and a patient.

The primary risk associated with sleep apnea is related to marrow collection, which is a surgical procedure. Registry members must be able to donate either marrow or peripheral blood stem cells, depending on the needs of the patient.

Regulating anesthesia is more difficult in patients with breathing. After surgery, marrow donors may require narcotic pain medication, which can further depress breathing. In patients with sleep apnea, even a small amount of anesthetic sedation can cause decreased airflow.

Despite the risk, some registry members express their willingness to assume the risk in order to help a patient. While the NMDP appreciates the courage and compassion that motivates them, it would be unethical for the NMDP to allow donors to do so.

To learn about other way to help patients and their families, visit http://www.marrow.org/HELP/index.html?src=tabinvolved

Of course, the explanation then raises the question of other disorders, such as narcolepsy and/or idiopathic hypersomnia....who also can respond differently to anesthetic or pain meds.

Regarding your questions about narcolepsy or idiopathic hypersomnia disqualifying a donor, it would best be considered on a case-by-case basis to determine the extent to which it affected breathing, and what impact it might have on the ability to donate.

So, there you have it...if you have sleep apnea, they tell you to go away... But, if you have some other condition of similar or greater risk...they'll let you in....because not waking up from anesthetic is okay if you keep breathing? Though one also wonders if they fully understand what sleep apnea can be?