When Patient Worthy met with Kristina to hear about her journey with narcolepsy she was happy to put her story out there for more reasons than one. She was hopeful…
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…
Kristina is the epitome of resilience in the face of Narcolepsy. Kristina was undiagnosed for years and was told her symptoms could be explained by depression and laziness. Now she…
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…
Epilepsy and Narcolepsy are related False. Epilepsy and Narcolepsy are NOT related. Sometimes, narcolepsy can be misdignosed as epilepsy. A narcoleptic experiencing symptoms of cataplexy can be mistaken for a seizure. But it…
Life with narcolepsy can be fraught with daily challenges. Excessive daytime sleepiness, cataplexy, or other narcolepsy symptoms can interfere with daily life and activities and make concentration difficult. And for…
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…
Wake up, Narcolepsy! When runners leave the starting line in Hopkinton, MA, for this year's Boston Marathon, the pack will contain some extra motivated individuals. TeamWUN will once again sponsor "wunners"…
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…
Happy Day-After-St.Patty's-Day! As you all know, Rare Disease Week was at the very beginning of March and we have some awesome highlights for you below. One about a young artist…
I’ve gotta tell ya that I’m pretty damn impressed with a gal named Joyce. I first heard about her arduous journey with narcolepsy after reading her story on the Narcolepsy Network…
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…
I first wrote about Julie Flygare back in 2015 and it’s awesome to hear that she’s as committed as ever to advancing the cause of raising awareness about narcolepsy. I got the recent scoop…
Come one, come all! Well, mainly those who you live with narcolepsy... The annual Narcolepsy Network (NN) Conference is in the works, and this year, Judith Owens, MD, MPH, Associate in Neurology (and…
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