Welcome to this week's Editor's Choice! If you're currently in the US, then we know it's hot outside-- but we still wanted you to get out there and raise awareness…
In December 2013, the well-respected medical journal, Nature, reported that narcolepsy had been confirmed to be an autoimmune disease. In autoimmune diseases, the body's normal immune system response goes wack…
Happy Almost Mother's Day Patient Worthians! This week is PACKED with announcements. First of all, it's Lyme disease Awareness Month, Cystinosis Awareness Month, Cystic Fibrosis Awareness Month, and Behcet's Awareness…
above image by Sandro Georgi Photography In honor of Mother's Day, Patient Worthy is featuring some of the Rare Moms in the community, those caring for children with a rare disease…
Patient Worthy had the privilege of sitting down with Kristina, a wife, mother and student, and hearing about her journey with Narcolepsy. Kristina found out she had narcolepsy and had…
Unfortunately, stigma is something many patients are all too familiar with. Patients with chronic pain may be labeled as drug seekers. Patients who occasionally need assistance walking and sometimes don't…
Happy Friday Patient Worthians! This week we are highlighting a story of a man with cystic fibrosis, racing to breathe and spread awareness of exercise therapy for those with CF.…
After years of being undiagnosed and even called lazy, Kristina finally learned she had narcolepsy. She's still learning how to best manage her life, with a husband and two kids,…
Do you have narcolepsy? Have you ever heard any of the following? “You should get a little more rest; then you’ll be fresh and ready to go.” “Exercise and eating healthy…
First of all, what the heck is cataplexy? You may ask if you are unfamiliar the term. Cataplexy is what happens when a person suddenly loses all voluntary muscle control, and…
A consistent struggle shared by those living with chronic conditions is to what extent that condition defines their lives. It's an ongoing battle and the results are constantly fluctuating. At…
I have a love-hate relationship with big cities. Every time I visit NYC, for instance, I feel kind of claustrophobic. I hate that you can’t see large expanses of sky…
As my colleague James Earnest Cassady covered earlier this week, Wake Up Narcolepsy, or WUN, has been raising funds for narcolepsy research in a pretty spectacular way: They have a team…
Two university professors in Japan are working to make a difference in the lives of people who suffer from narcolepsy and cataplexy associated with narcolepsy. Dr. Hiroshi Nagase and his…
Anyone who’s lived with narcolepsy knows how tough it can be to find other people who can relate to what they’re going through. The folks at the Narcolepsy Network know…
Thanks to narcolepsy, Brianne had an unusual childhood. She began having the symptoms of narcolepsy around the age of seven. As a young girl, Brianne would sleepwalk into the kitchen…
Did you know there are dos (that's Spanish for "two") forms of narcolepsy? Yep! Type 1. Type 2. Very similar in truth. Both involve excessive sleepiness. What distinguishes the types is…
When Julie Flygare was diagnosed with narcolepsy eight years ago, she had no idea what would transpire in her life as a result. She realized that very few people understood…
"Paralysis" "Convulsions" "Bizarre" "Frightening" "Anxiety" "Depression" These are just a few of the words you'll find on this narcolepsy infographic, posted by Tumblr user needlenightnemesis. If you don't live with…
Ya know that old wives’ tale about bad things always happening in threes? Well, here’s a perfect example of why you should never believe in "that old witchy stuff": Three AMAZING…
I just finished reading about narcolepsy lifestyle adjustments on the Narcolepsy Network’s site, which I found helpful, but I’m really torn about what to do. Ugh. I have a colleague…
Fine, I’ll be the first one to say it—I’m a cynic. Straight up. It’s a family trait so proudly established that when questioned by a very young Kiki about our…
Way to go, Vice magazine/website! A young guy trying to live a normal life with narcolepsy needs a tightly-regulated, prescription medication—that also happens to be a hot club drug—to function.…
This week's Meme Monday is rather special. Our chief editor is on the ground live tweeting from NIH during Rare Disease Day 2016 #RDD2016 - her first thoughts: "HERE, YOU…
In the "Don't judge; you never know what someone's going through" department.... Oh. My. GAWD! This woman is awesome! Growing up, this young woman blogger, whom we'll call Ezzie, was…
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