The First Ever Seattle Rare Disease Fair happened on June 3rd, 2017. And it was a BLOOMING success. The goal of the event was to spread awareness of rare disease…
Want some more news, events and announcements on Narcolepsy? We got 'em! [one_half] [/one_half] [one_half_last] A Narcolepsy Miracle Drug? First Patient In Phase 3 Study Evaluating Treatment for…
I like to say that my brother has an addictive personality. I introduced him to George R. R. Martin’s A Song of Ice and Fire series, and he read the four…
I know, we’ve all heard it a million times before. A good night’s sleep is essential for optimal health. However, as much as we love sleep, it’s easy to get…
Sam Edwards was always exhausted. No matter how many hours of sleep he would get, he just could not stay awake. But as a professional race car driver, he needed…
I was at a gala hosted by my local library about two weeks ago. It was a posh affair, as library galas go, and everyone was all dressed up. The…
I’m barking mad! You know the old saying, “Let sleeping dogs lie,” right? Well, I couldn’t help but think of the 200,000 Americans living and struggling with narcolepsy because they’re…
Imagine watching movies with friends, not knowing that you have narcolepsy and struggling to stay awake. Your eyes keep rolling and you keep fighting to stay awake. Yet you cannot.…
San Diego is rumored to have one of the nicest climates in the United States. From what I've heard, it's a balmy 72 degrees almost year-round, and the sky is…
It’s a plot device. It’s a joke to be exploited by comedians. It shows up as the punchline in movie after movie. As soon as it comes out that a…
The way I see it, the film-making Nolan brothers must have been trying to one-up each other. I like to imagine them sitting on Christopher’s back deck. Obviously, it has…
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,…
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