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…
"It's crazy that apathy can be allowed to cost so many lives" Dear Readers, How many of you are organ donors? How many of you had to pull out your…
Sometimes we look at our problems as if they were wrapped in a web of unintelligible contradictions and absurdity and we take it upon ourselves to unravel that web of…
Soccer star legend and two-time Olympic Gold Medalist, Mia Hamm, whose real name is Mariel Margaret Garciaparra, is rocking the aplastic anemia community by sharing her personal story to inspire…
He descubierto que a través de todo esto, mi hijo ha empezado a preguntar, '¿Cómo puedo ayudar? ¿Que puedo hacer?' En cierto modo, esas son las mismas cosas que le…
Greetings Patient Worthians! This month we are highlighting Amyloidosis, a rare disease that affects organs such as the heart, kidney, liver, the nervous system and more. While there is no…
Happy Rare Disease Week friends! This week we have an exciting article on the first day of Rare Disease Week on Capitol Hill (though technically, the first day was at the…
I'm sure you've heard these popular phrases: Don't judge a book by its cover Looks can be deceiving You never know what someone else is going through until you walk…
Okay, you know what’s funny? I literally just wrote an article "The Paleo Diet and Narcolepsy: What You Need To Know" about a “Paleo Narco,” a young woman with narcolepsy…
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
