Oh here’s an article that really grabbed my FREAKING attention about a 20-something Chinese woman who is living with narcolepsy. She has chosen not to take medications for her narcolepsy…
Fun fact about Bradley Mann: he used to feed boiled eggs to the pet raccoon at his nursery school. Trust me, this is only the start to an interesting life…
If you or your loved one has cataplexy, I definitely suggest you read this post, written by a young woman who’s living with it. I say “living with it” vs.…
Welcome back Patient Worthians! This week we have some exciting news for the MS community. Additionally, we have some great tips on how to build your CF dream team. Also,…
What would you do if you felt an overpowering urge to nod off? For most people, I think we would just go to sleep. It’s relatively easy to find a…
Happy Spring Patient Worthians! This week we have pieces from two rare women, one battling the rare disease pemphigus vulgaris, part of the pemphigus and pemphigoid family. The other is…
I read a pretty cool short and sweet article that you need to check out, written by a person who is living with narcolepsy. I’m so impressed by how well…
Jack played high school volleyball and served with the junior fire department. He hopes to become an engineer. Donovan played saxophone, competed as a wrestler, performed theater, and reached a…
Imagine what it would be like to feel weak every time a strong emotion took hold. Of course, we all know that feeling when our knees feel weak or our…
You brush your teeth, put on your pajamas and climb into bed. Someone attaches wires and electrodes to your head, chest and legs. You drift to sleep under the watchful…
Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…
I was alarmed and yet inspired by a recent article I read. Narcolepsy affects nearly 200,000 people in the United States, but sadly goes undiagnosed and undertreated. Don’t let this…
I’ve found that people feel very differently about support groups for their diseases, including narcolepsy. Some seek them out. Others avoid them at all costs. Some might not like the…
It’s a scene no one anticipates. The doctor walks into the room where you, and maybe a loved one, are sitting. Clipboard in hand, the doctor pulls up a chair,…
¿Qué es todo esto acerca de comer un pedazo de manzana y luego caer en un sueño profundo durante años y años? Eso es lo que le pasó a Blancanieves,…
It goes without saying that sans research, medical science would be stuck in the Dark Ages. I doubt any of us wishes bloodletting for narcolepsy--or any reason!--was still a thing.…
We are back from Rare Disease Week in Washington, DC! And do we have some highlights for you below?! Rare Disease Day at NIH was not only informative, but encouraging.…
Most parents have had their child fall asleep in an unusual place (think on the potty) at least once. But when it happens frequently, (during mealtimes, in the middle of…
In college, everyone loved the "Fall back" night of Daylight Savings Time. We got an extra hour of sleep and it was much needed considering we were likely celebrating Halloween the night…
The main goal of any well-run camp program is making sure children have the time of their lives, and for one summer camp in Kentucky, their goal is to provide…
Welcome back to Editor's Choice Patient Worthians! This week we have a story on some awesome rockers that are helping out the POTS community. We also have a sweet TEDx talk…
Es injusto, pero Hollywood cree que la narcolepsia es divertido. Una y otra vez, los personajes que sufren de este trastorno neurológico raro son retratados como bufones, cayendo la cara…
I met a woman at a patient conference last year who confided she had just been diagnosed with narcolepsy. She said because she knew next to nothing about the disorder, she…
I’ve been known to doze off occasionally at odd times. My dad does this and so did my grandfather. And I know that's one of the symptoms of narcolepsy. My…
En el 2009, una cepa desagradable de la gripe, la gripe porcina es decir, corrió alrededor del globo golpear a la gente hacia abajo como si fueran bolos. Los primeros…
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