above photo by Sandro Georgi Photography Imagine that your son was suddenly falling asleep all the time; around the house, at school, during dinner, and that when you took him to…
Admitelo. Nunca superaste la noche de brujas Oh, por supuesto, es posible que no sea capaz de anotar esas barras de chocolate diversión de tamaño dulces de los vecinos más…
Kathy is the momma of Emma, a nine-year-old girl who grew up relatively normal. She was spunky, energetic, and cheery. But things changed for Kathy and her family when Emma was…
If you're curious about narcolepsy from a first-person perspective, there's an awesome YouTube channel you should subscribe to. Sleepy Sarah Elizabeth is creating a video journal detailing her struggles with…
About a week ago, my best friend’s husband had a life-threatening emergency and was rushed to the ER. So when I got the call late that night, I too rushed to…
My story starts back when I was around 18 years old, almost 20 years ago. At the age of 18, I had my first DVT, deep vein thrombosis (blood clot)…
It can be hard sometimes for your friends, loved ones, and peers to know what to say when you’re dealing with chronic illness. “Feel better soon” Doesn’t really work. There…
Si, el fin de semana del 9 de Octubre, vio a la Hereditary Angioedema Association (HAEA) en las nubes y feliz-- pero no de la manera en que estas pensando!…
Why does time always have to run so short? Anyone who has ever experienced kidney dialysis knows the grueling process--the waiting game you play until a kidney becomes available for…
In the summer of 2001, my neck muscles began to involuntarily contract, causing my head to pull to the right. I had no idea what was wrong. My doctors were…
“Chels, I really think you should get tested for LYME.” That's where we left off in Part 1 of Chelsea's post. And now... Part 2. I kind of balked at…
Here at Patient Worthy, we've written quite a bit about Narcolepsy. However, we can't help but think that taking a step back to answer some basic questions about the disease is…
Technology today is taking us to new (un)comfortable heights, at a pace few would be surprised by. For those who are living with narcolepsy, this self-piloting drone could be a…
Estimada Jessica, Te miro y veo determinación. Las cosas son tan difíciles para usted ahora, corriendo de un hospital a otro. Yo sé que usted nunca imaginó que su vida…
A la edad de 31 Andrea habían sido diagnosticados con espondilitis anquilosante (AS), la colitis, la escoliosis, cifosis, y la osteoporosis ya pesar de que estas condiciones han hecho su…
The Paleo Diet—which has the hunter-gatherer food aesthetic of fruits, vegetables, and lean proteins—has gotten a whole spectrum of attention. We’re talking everything from obsessed proponents to frantic debunkers, and all the…
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.…
There's nothing more important than being able to create collaborative, meaningful and positive conversations between Healthcare Providers and Patients and vice-versa. That's why, for the remainder of the year, you'll…
First, I’d like to start by saying that no chickens were harmed in the making of this article. Second, I’d like to announce to the world that I have a…
It's a new year! You know what that means? TONS of people at the gym. Do you know what else that means? TONS of germs at the gym. When you're…
30 days until April 1st when Patient Worthy will announce the winner of a $500 travel stipend to the 2016 Acromegaly Community Bi-annual Meeting, April 29-May 1st (which is free). Patient…
Dee Daud suffers from an extremely severe case of narcolepsy. Even walking his dog, which he tries to do three times a day, can turn into an emergency. He will…
A los 5 años de edad, Hadley Alexander no es normal. Cada mañana, su día comienza oficialmente a las 7 am Ella convenció despierto por sus padres y, a través…
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…
Son of a biscuit! I'm a little upset and I'll tell you why, but first I have a confession to make: I don't actually live with any of the conditions…
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