Retraction of Paper “Confirming” Narcolepsy as an Autoimmune Disease

Today is a disappointing day in the narcolepsy community.The scientific
manuscript reported to have “confirmed” narcolepsy as an autoimmune disease has been formally retracted.

The retraction notice states, “The researchers report that they have been unable to reproduce the paper’s key findings.” (source www.retractionwatch.com)

m.stm.sciencemag.org

Source: m.stm.sciencemag.org

The paper, entitled  “CD4+ T cell autoimmunity to hypocretin/orexin and cross-reactivity to a 2009 H1N1 influenza A epitope in narcolepsy,” and published by Science Translational Medicine in December 2013, caused more than media ripple.  Submitted by co-senior authors Mellins and Mignot and collaborators, the original article was highlighted in more than 100 news and press releases, and received featured articles and posts on major news sites including Nature News, Scientific AmericanThe Huffington PostMedical News Today, National Geographic, Psychology Today — it even made waves in The New Reddit Journal of Science

The article has been cited 4 times since it’s publication in Dec. 2013, according to PubMedCentral.

At the time of publication, the paper was reported to demonstrate immune cross-reactivity between a flu antigen and the orexin protein — so-called molecular mimicry. In layman’s terms, if an immune response was generated recognizing flu antigen (such as during natural infection or in a vaccine), that immune response could also target neurons in the brain expressing orexin. Specifically reported was (1) characterization of narcolepsy-specific auto-immune CD4+ T cells, (2) their corresponding epitopes, and (3) evidence of a mimicry-based mechanism potentially explaining the association between narcolepsy and influenza infection.

Orexin is a hormone critical for maintaining wakefulness. Loss of orexin-producing neurons is believed to be the primary cause of symptoms in many individuals with narcolepsy. You can learn more about narcolepsy here.

These results were poised to explain the increases in narcolepsy following Pandemrix vaccinations in Europe during the 2009 H1N1 influenza pandemic.  Earlier studies suggested that the adjuvant used in the Pandemrix vaccine, AS03 (which was not approved for use in the United States) may have been to blame.

The findings of the paper in question caused a stir because for many years studies have failed to demonstrate orexin immunoreactivity or a cell-specific immune response to orexin producing neurons, despite the fact that narcolepsy contains other “autoimmune signatures” including a high (90%) association with a specific HLA genotype (HLA-DQB1*0602), and a strong association with the T-cell receptor alpha locus, among others.

A quote from the Nature News article summarizes the general sentiment well:

“Thomas Scammell, a neurologist at Harvard Medical School in Boston, Massachusetts, says that the results are welcome after “years of modest disappointment”, marked by many failures to find antibodies made by a person’s body against their own hypocretin. “It’s one of the biggest things to happen in the narcolepsy field for some time.”

 

Co-senior author of the study Mellins is quoted:

“Up till now, the idea that narcolepsy was an autoimmune disorder was a very compelling hypothesis, but this is the first direct evidence of autoimmunity. I think these cells are a smoking gun,”

 

With many basic science manuscripts which make significant discoveries, the excitement is often confined to the scientific community. What is different about this paper is that the enthusiasm bubbled over into patient circles and prominent outreach organizations. Narcolepsy has been long suspected to be of immune origin, and the fact that this theory hasn’t been yet confirmed has meant the often stimatized patient population continues to struggle with being incorrectly diagnosed with mental and behavioral disorders, often up to 15 years before receiving a correct diagnosis. One of the important advancements that might have been made from the discoveries of this paper was the development of a new diagnostic test for narcolepsy, which could improve diagnosis and time-to-diagnosis for patients.

Interestingly, a letter written by inventors of Pandemrix was submitted in February 2014 stating that  “CD4+ T cell cross reactivity” was part of a “research plan.(update 9-9/30/14: the letter has since been retracted). The research plan, authored by GlaxoSmithKline researchers is entitled “Narcolepsy and A(H1N1)pdm09 vaccination: Shaping the research on the obeserved signal” was published in December 2013.  In it, they listed key areas of research needed to fill the information gap about how the Pandemrix AS03-adjuvanted influenza vaccine could have caused increases in narcolepsy:

Therefore, the following key areas of research can be identified, (1) characterization of hypothetical narcolepsy-specific auto-immune CD4+ T cells, (2) mapping epitopes of such T cells, and (3) evaluating potential mechanisms that would enable such cells to gain access to the hypothalamus. Addressing these questions could further our understanding of the potential links between narcolepsy and A(H1N1)pdm09 vaccination and/or infection. Of particular interest is that any evidence of a mimicry-based mechanism could also explain the association between narcolepsy and A(H1N1)pdm09 influenza infection.

 

As a reminder, the reported findings of the now retracted “CD4+ T cell cross reactivity…” paper were: (1) characterization of narcolepsy-specific auto-immune CD4+ T cells, (2) their corresponding epitopes, and (3) evidence of a mimicry-based mechanism potentially explaining the association between narcolepsy and influenza infection.

A timeline of events is shown below:

retraction timeline crop

It should be noted that the publications of GlaxoSmithKline researchers did not reportedly contribute to the rectraction of “CD4+ T cell Autoimmunity…”

According to RetractionWatch.com, Mignot has said regarding the retraction:

Mignot tells us:

We were just continuing our work based on the finding, trying to establish it as a diagnostic test, but could not replicate it.  No other work is affected, and in fact the DQ binding studies of that article are perfectly fine.  Only the [Enzyme-Linked ImmunoSpot (ELISPOT)] results are in question.

The retraction notice first appeared on the mobile site of Science Translational Medicine on July 23, 2014, but linked to a “Content Not Found” page. The “Retraction” section was missing from the non-mobile version of the website, and no reply was received when the Editors of STM were contacted to clarify whether the article had been retracted or not.

In spite of this disappointing turn of events, the community is hopeful that we will continue to move forward in our pursuit of understanding the molecular mechanisms of narcolepsy and that these developments will lead to improved diagnostic tools and treatments.

References:

A. K. De la Herrán-Arita, B. R. Kornum, J. Mahlios, W. Jiang, L. Lin, T. Hou, C. Macaubas, M. Einen, G. Plazzi, C. Crowe, E. W. Newell, M. M. Davis, E. D. Mellins, E. Mignot, CD4+ T Cell Autoimmunity to Hypocretin/Orexin and Cross-Reactivity to a 2009 H1N1 Influenza A Epitope in Narcolepsy. Sci. Transl. Med. 5216ra176 (2013).

M. Brandt. “Narcolepsy is an Autoimmune Disorder, Researcher Says.”  Stanford Medicine News Center. (2009.)

K. Conger. “H1N1-triggered narcolepsy may stem from ‘molecular mimicry,’ study finds.” Standford Medicine News Center. (2013)

E. Yong. “Narcolepsy confirmed as autoimmune disease.” Nature News. (2013).

S. Harris. Notes on NarcolepsyPsychology Today. (2012).

J. Hallmayer et al. Narcolepsy is strongly associated with the T-cell receptor alpha locus. Nature Genetics. 41, 708 – 711 (2009)

Dear Narcolepsy

Dear Narcolepsy,

My name is Christina, you may or may not remember me – we first met a long time ago. Well, I remember you quite well, and there are a few things I need to say.

First, I want to begin by saying that I don’t hate you, but there are some things we need to work out together.

When I was a kid, you wouldn’t let me play on the playground with the other kids very much. I could play some, but I would often have to sit on the sidelines

Sometimes, you make me question my sanity. For example, one time you made me dream that I had a sexual encounter with someone I shouldn’t have. It was a very very life-like dream and when I woke up I was very mad, hurt, angry, and upset! Finally, after a few days of questioning myself, I realized you made me dream up the whole thing! What a cruel thing that was to do!

You made me fat. Ugh. I ate less and less and gained more and more. And that made people think I was even more lazy than I really was. It takes me so much more work to keep me weight normal than other people. I didn’t know this was your doing until much later in life. I spent a long time beating myself up about it.

I almost failed out of school. Yes. That’s right. Failing grades. Sleeping in class. Teachers questioned if I would ever go to grad school. Some even laughed at the thought I would.

You turned me into a zombie. Enough said.

You made me look drunk. When I get too tired I act weird and loopy. Some people think I look publicly intoxicated sometimes.

Sometimes I can’t drive. I can’t drive at night because of you. This is extremely inconvenient for me.

You make me mean.Thanks to you, my boyfriend hates me in the morning. I’m cruel, grumpy, and tired after fighting off monsters all night.

I haven’t been to a New Year’s Celebration in 5 years. 12 am is way to late for my brain.

I can’t finish more than 1/2 a movie. Oh? There’s some kind of happy ending? I wouldn’t know because I fall asleep during the climax when the whole world is going to sh*t.

I can’t eat cakewithout falling into some kind of 3 day coma. I hate birthday’s now.

You make me afraid to have children. Afraid that one day I won’t be able to hold down a job. Finish school. Have a productive life. You make me afraid.

All of these things aside, my dear friend narcolepsy, there are a few things that I am grateful to you for.

You have made me become a better person. 

Because of you, I have been forced to change my diet. I changed my diet and became a healthier person. (Which, in part made you back the hell off).

Because of you, I became a runner.

Because of you, I learned to treat people in a way that I would want to be treated. With understanding and compassion.. who knows how many people I meet have invisible illnesses?

Because of you I know the value of being awake. How precious simple things are that are continuously being taken for granted by others.

Because of you, I became a scientist. You made me need to know the answers to life’s funny questions.

Because of you, I’m the hardest f*ing worker anyone will ever meet.

You taught me to keep my head held high in the face of extreme physical limitation.

You taught me to have faith.

You taught me the value of executing a task while you can. Idleness is for ninnies.

So, you suck narcolepsy. But, also, thank you.

Christina

Titles

A book about the narcoleptic journey? The autoimmune journey?

What a dream, what a dream.

 

Working titles for books:

 

No More Narcolepsy

A book about how a gluten free diet helped me reclaim my life and have days where I no longer suffered from narcolepsy.

Sleepy Scientist

A how-to guide on how to get the hell through higher education with a chronic sleep disorder.

 

Gluten Free Narcolepsy

A how-to guide on how to what to eat and what not to eat as a narcoleptic (or someone with an autoimmune disease).

Is that an alien in my room?

A picture-based book for children explaining hypnogogic hallucinations, sleep paralysis and other facets of narcolepsy to children suffering from the disease.

Your kid is not lazy.

I have talked to too many parents of children with narcolepsy that still insist their children lack motivation. Actually, it’s much the opposite…. you will never understand the kind of raw willpower it takes for a narcoleptic kid (or teenager, or adult) to get out of bed. This book will be a how-to-not-treat-your-kid-like-they-are-lazy guide. We do have motivation (a lot of it, in fact); this book will help you learn to recognize it.

 

Wordless Wednesday: WEGO Health Activist Writer’s Month Challenge Day3

I painted this last year for a dear friend of mine who also has narcolepsy.

A few of my favorite things about the piece:

1) Black areas of the brain “dotted out” to demonstrate the areas of neurodegeneration seen in narcolepsy.
2) Hand and eyeball to demonstrate the visual hypnagogic hallucinations which are a specific feature of narcolepsy.
3) wave-like motions and sound waves above the reclining spine and brain reminiscent of the wave-like physical and auditory experiences in individuals experiencing hypnagogic hallucinations
4) Lilluptutian hallucinations (the little black men), a not-uncommon feature of hypnagogic hallucinations.. It is also significant that the dreams (i.e. little black men) invade the surrounding space and reside on the area where the chest would be of the person. A “Witch sitting on the chest” is also a common feature of hypnagogic hallucinations and sleep paralysis events.
5) A symbol for science in the upper right hand corner, as a reminder that our scientific efforts can shed light, hope and relief, on all neurodegenerative disorders, among them narcolepsy.
6) White speckles resembling migraine-related auras. These are seen in vascular and neurodegenerative dementia, in epilepsy, neurotoxicities, multiple sclerosis, among others, and may also be seen in narcolepsy on occasion.
 Here’s a close up of the piece. I’m a huge fan of 3D-ness.

 

Overcoming MS with diet.

This morning, I found a truly inspiring TedTalk from a woman diagnosed with multiple sclerosis, an autoimmune neurodegenerative disease not completely unlike narcolepsy. Like narcolepsy, which is neurodegenerative and believed to be autoimmune, multiple sclerosis presents as a life-long disability, from which there is “no known cure,” and medications are prescribed only for symptom management.

This life-long disability was not an option for Dr. Wahls, and, like so many of us who receive dissatisfying prognoses and aid from conventional medicine, turned to PubMed to begin searching for her own answer.

What Dr. Wahls found was not only symptom management but reversal of her multiple sclerosis through diet-modification, excluding gluten and grains, and consuming a paleo/hunter-gatherer diet rich in leafy vegetables. Here “cure” came in just 4 short months.

You can find more about Dr. Terry Wahls at her website. Thank you Dr. Wahls for being a outspoken doctor, patient, and advocate of healthy eating for autoimmune disease!

 

 

 

Top Ten Reasons I Will Never (Not) Be Paleo

10.  I feel incredible.  I’m confident that 90% of people would feel 100 times, if not more, better consuming a “paleo”-type diet. I don’t like confining myself to the “gluten-free” or “paleo” movements, but I am both gluten-free and “paleo.” The longer I go without eating processed foods or sugared-alternatives, the more I can feel how food actually affects my body. Whenever I “cheat,” and eat a high glycemic-index meal, I crash and feel like crap for the next day. I don’t like feeling like crap. So I keep eating paleo.

9.  Freedom from food. Sugar is addictive. Bread is addictive. Prior to going gluten free, I noticed NOTHING I ate didn’t have some kind of wheat (or at least food starch) in it. In fact, most times, something starchy was the center of the meal. That’s the American way, right? “Here, honey have a roll.” My sugar addiction began when I was young, craving sweets and cakes, anything I could get my hands on. I’m sure I had it worse than some, but maybe not. As I became older, my sugar addiction spiraled out of control, and I had no idea it was even happening. I had learned in school to stay away from candy, but that grains and bread were the bottom of the food pyramid. I was SUPPOSED to be eating >300 carbs per day! When I moved out on my own, I couldn’t keep chips, candy, sugar, ice cream, or even alchol (it’s just another source of sugar for me) in my house for fear I would overeat… and that’s when I started thinking maybe it was the sugar.

Like most “dieting” women I know, I counted calories and fat (like I was instructed to by the bread-on-the-bottom-food-pyramid-nutritionists) like a mad woman. I took my weight 3 times a day. I obsessed over my clothes-size, how I felt in them, and was self-consious to eat in front of people. I would restrict my eating to point of refractory bingeing. Even if I only skipped lunch, I was trying to devour everything in site come dinner. This was before I found gluten free / paleo.

On gluten free / paleo, I no longer obsess over the calories and sugar I am putting into my body. I have complete freedom from the obsession of food. I eat when I am hungry. I don’t eat when I am not. I don’t worry about the nutritional content of what I’m eating most of the time, because my diet is inherently filled with nutrient-dense foods. Simple as that.

8. No more naps. Mid-afternoon crashes are the worst. On paleo, I don’t get them any more. I remember as a highschooler, coming home and sleeping for 2-3 hours every day. I was so fatigued. I have had a nap twice in the past year. Adding it up, that’s more than 730 hours of gained productivity, which is desperately needed as a hard-working graduate student.

7.  “I’m regular.” I don’t want to delve into the realm of too much information, but prior to Paleo I was incredibly irregular. Irregular cycles, irregular digestion, irregular sleeping habits, irregular moods. More than that, I had never been regular. Many of my earliest memories of childhood were surrounded by GI problems, mood problems, and sleeping problems… but how was I supposed to know they weren’t normal? No one ever really told me how often I was supposed to be going to the bathroom. Anyway, you name it, on a low-fat, high-fiber diet, mine wasn’t normal. By body’s internal clock was just all warped. On paleo, I’m like a machine. Everything is all “regular,” a feeling I haven’t had in my entire life until now.

p.s. – I hardly ever eat fiber.

6. Better cholesterol. I get made a lot of fun of where I work because I love to eat pork rinds. Lots of them. I will eat a bag for lunch without blinking. They are such a common and frequent part of my diet, that it seldom occurs to me that it’s weird, until someone comments that I am so unhealthy for eating them (ironically, I am the skinniest person at my work).  I eat a very high cholesterol diet. I eat red meat once or every other day. I eat about 3 eggs a day. I eat pork rinds to my hearts content (insert pun), and snack on nuts. Sounds like I should have the worlds worst heart, right? Wrong.

I began having my cholesterol monitored after a blood test revealed high LDL and low HDL cholesterol, and high triglycerides.  This was a bit scary for me, having a family history of heart disease.  My abnormal cholesterol test came at 20, while I was doing a low fat, grain-based diet, and running a mile a day.

Since going “paleo,” my LDL is normal and my triglycerides are down. I still haven’t been able to raise my HDL, despite maintaining very frequent cardio exercise (>5/miles of running per day), but I think this may just be true genetics at play.

5. I’m thinner and more tone.  I have never not felt fat. Even when I was thin and severely calorie-restricting, I always felt fat on a grain-based diet. In addition, as I entered late adolescence/early adulthood, I actually started becoming fat, peaking at 150 (quite large for my small 5’3 frame) while in college. I became fat because I was eating the recommended diet of low-fat, whole grain. In addition to becoming fat, I also became sick. On paleo I maintain a healthy and fit 115 no matter how much I exercise or how many bags of pork rinds I eat.

4. I’m happy. All the time. This seems like a weird statement, but, I’m always happy. Literally. I remember struggling with depression as young as Kindergarten. My grandmother told me in my teenage years, when I battled daily with manic depression and fatigue, “sometimes as a child you just looked so sad.” It broke my heart to realize that my family had noticed my sadness at such a young age. On a low-fat, whole-grain diet I cried, screamed, had emotional outbursts, resented, and surfed the lowest-of-lows and highest-of-highs. On paleo, I’m simply happy. That’s it.

3. No more pain. As a young girl, I remember my mother struggling with chronic headaches and backpain. I never knew her agony until I was about 17 years old, when I began having chronic headaches and migranes with auras.  I had also had joint pain (primarily knee and back) for most of my life (the doctor’s decided I had “growing pains,” which is code for, “it’s all in your head.”) I dealt with the chronic headache and low-grade aches and pains by taking 800mg of ibuprofen every day. For years. After going gluten free, my chronic pains and headaches subsided, but the auras persisted. When I went fully paleo, the frequency of auras (without pain) reduced from once or twice a day to once every two months or so. They still happen randomly every once in a while, but not nearly with the frequency they used to, and their usually triggered by taking a hot shower. I now take Advil once a month for cramps, but some months I don’t need it at all.

2. Paleo (nearly) cured my narcolepsy. I first became gluten free about a year after I was diagnosed with narcolepsy, and became full paleo about a year after that. Before deciding to become gluten free, I realized I was getting tired after eating, and if I went all day without eating, I was less tired. I went searching and found a truly incredible blog called The Zombie Research Institute. A woman whose brain clearly worked like mine did, who cured her narcolepsy with gluten free? It sounded ridiculous, but I was desperate for anything to work. I tried it. Very strict. And it worked. Gluten free combated narcoleptic attacks and hypnogogic hallucinations, but I feel my most awake and alert by excluding all refined sugars and grains and adhering to a paleo diet.

1. Paleo saved my lifeThis might seem like an inflammatory statement (another pun), but it’s not a joke. I believe going gluten free (and later paleo) literally saved my life.  Throughout my childhood, adolescence, and young-adult years I was only sick and sad. There were many many days where I was quite sure that I wouldn’t make it past 40. I had physically struggled for so long, that I didn’t want to make it past 40. I couldn’t bear the thought of living another 20 years in tiredness and pain.  Now, I am exited to age in health and grace; and, actually look forward to tomorrow.

In addition to posting these reasons that I “do paleo,” the new fat-diet of the day, quite proudly, I would also like to take a moment to respond directly to some of the “points” raised in the original post “Top 10 Reasons I’m Not Paleo” by Cheeseslave.

1. To first answer Cheeseslave’s question:

But honestly, if you’ve been eating paleo for any length of time, don’t you miss grilled cheese sandwiches? Quesadillas? Pizza?

 

Sure. Yes. I miss pizza, pudding, ice cream, M&M’s, and especially peanut butter. I miss sugar the way a 3-pack-a-day smoker misses a cigarette. There is a twinge of pain everytime I see someone eating a doughnut in part because I hate wheat, but also in part because I WANT THAT DAMN DOUGHNUT.

That said, I miss the narcolepsy less than I miss the doughnut.

2. In response to:

Is the modern epidemic of “gluten intolerance” really caused by eating wheat? Or is it possible that something else is causing gluten intolerance?

There is a theory that antibiotic drugs cause an imbalance of gut flora and cause prevent the digestive tract from secreting enzymes that enable us to break down complex proteins such as gluten. Sounds a lot more plausible than the idea that wheat suddenly started causing gluten intolerance out of nowhere.

In the first place, the alternative theory isn’t bad. I agree that something other than gluten could be causing gluten intolerance. Genetics, a changing gut microbiome, antibiotics, sugar, birth control. Alternative theories are fine and dandy, but gluten is a very good candidate, as the protein has been demonstrated to be inflammatory and barrier-compromising to the intestinal tract all on it’s own. It also stimulates antigen presenting cells to be “preactivated” among “normal” healthy individuals without celiac disease or gluten sensitivity. Here’s another one demonstrating positive benefits of gluten-removal from IBS patients who did not have clinical celiac diseaseBut a different cause for gluten intolerance, doesn’t justify continuing to eat it. It would still be a gluten intolerance; wheat’s fault, or not. 

In the second place, gluten isn’t the only thing found in wheat. Wheat germ agglutinin (WGA) is a lectin found in wheat and has been demonstrated to have antinutritive effects irrespective of gluten intolerance and celiac disease. Concentrations of WGA are higher in the seed and young shoots of wheat, to protect it from predation from fungus, insects, and animals. In fungus and insects WGA binds to the chitin. Chitin is found in the cell wall and intestinal system of fungi and insects, respectively.  In animals and in humans, it binds strongly to sialic acid on intestinal cells, where it is internalized, and can also agglutinate bacteria and red blood cells. Because it is stable at low pH (i.e. poorly digested) and resistant to gut proteases, it is gaining widespread attention and research to be utilized as a carrier for drug delivery.  Once inside epithelial cells of the digestive tract, it accumulates in lysosomes and resists degradation. It alters intestinal permeability, allowing for the passage of small molecules across the intestinal barrier. In addition, in sufficient concentrations, it stimulates proinflammatory cytokine release as well as affecting the activation of immune cells in the gut, and can cause pancreatic hypertrophy.  It should be mentioned here that lectins are not only found in wheat (but wheat has among the highest lectin concentrations and is the most prevalent plant lectin), and their entrance into the blood stream and implications on systemic health has yet to be widely investigated. For another good review, go here.  How is that for “antimicrobial” theory?

I struggle with anger towards my mom for not figuring out that I was tired after I ate.  Because of food, I was sick and sad for most of my life. If only my mother had known or realized that food could affect how you feel SO MUCH, I know she would have changed my diet at a young age and not let me have dessert at all (or, made a nice paleo alternative).

In contrast, I know I will be the most-hated parent on the block when my child realizes that Oreos exist. But, to me, if I were to allow my child to indulge in sugar, I might as well put vodka in their bottle, and a joint in their hand. Sugar is a drug. It works the same on the brain. And I’m sure little Johnny will sneak away to Billy’s house to eat ice cream on the weekends. But I refuse to allow my children to become addicted to sugar and food in the same way that I was. And they sure as heck won’t be sad, sick, or worse for the pie that I put on their plate. 

 

 

Narcolepsy on National Geographic

This week, narcolepsy will be in the limelight on the National Geographic program Taboo: Strange Behavior.  The show will air on the National Geographic channel on June 24, 2012 from 10:00 – 11:00 pm EST.  This episode follows the life of one narcoleptic man, Dee Daud, who has a severe form of narcolepsy with cataplexy. A preview of the episode can be found here

Dee Daud featured on Taboo: Strange Behavior

Narcolepsy may present with or without cataplexy.  Cataplexy is a loss of muscle tone (without loss of consciousness) often in response to emotional triggers. Not all narcolepsy presents with cataplexy as does Dee’s, and not all cases of narcolepsy are as severe as Dee’s.  Nonetheless, I am excited about it being featured on a prime time TV show.

Taboo’s self-declared mission is to “journey beyond your comfort zone to explore behaviors and lifestyles that are acceptable in some cultures but forbidden, illegal or reviled in others.” In this season, topics such as “murderabilia,” extreme tattooing and scarification, polyamory, and “furry culture” are presented alongside individuals living with Tourette’s syndrome, autism, and narcolepsy.  The concept of presenting rare medical diseases alongside other “taboo” behaviors (as if narcolepsy is a culturally taboo lifestyle choice) seems to me to belittle, dramaticize, and promote further sterotypification of individuals living with disabilities.  That said, I am excited to watch the program, and am confident that Dee and the program itself will help to promote awareness of narcolepsy and cataplexy; and, awareness of any kind can’t be bad.

After the program, I will be posting a more detailed recap of the show and how it may help or hurt the public view of narcoleptic individuals or narcolepsy in general, and I would love to hear your thoughts on the concept behind featuring narcolepsy on a program such as Taboo: Strange Behaviors.

——-UPDATE——–

After watching Taboo: Strange Behaviors I am pleasantly surprised.  National Geographic presented Dee’s story along with Paul Stevenson (a man with Tourette’s and an accomplished Tourette’s advocate.), Bethany Scheiderman (a young girl with Trichotillomania), and autistic friends Larry Bissonnette (who is also an accomplished artist) and Tracy, who are advocates for individuals with autism, recently creating a documentary for autism awareness called My Classic Life.

Overall, the program was moving, inspiring, and very well done. At the end, the program even raised the question of whether it was individuals with disabilities whose behaviors were taboo, or if rather the reaction by society is what should be deemed taboo.

Many thanks to National Geographic and Dee Daud for raising awareness about narcolepsy (and other disabilities)!