It sounds like a cliché to say that “becoming a parent changes everything.” Probably because it is a cliché. But as a parent, I know it also happens to be…
¿Por qué es todavía desconocida una enfermedad descubierta hace 127 años? No sólo eso, sino una enfermedad que afecta a 4 millones de personas en los Estados Unidos hoy! La…
It's not selfish to take care of yourself. It's good for you and it's good for your loved ones. It's hard to be there for other people when you haven't…
Welcome back to Editor's Choice Patient Worthians! This week, a PW Contributor told a love story about how her husband's bipolar disorder helps her manage her rare disease. We also have an…
Every week, my son’s principal sends a voicemail to parents highlighting the week’s news and activities. At the end of the message, she signs off with a reminder to “Be…
Imagine walking through the woods at night. You have no lantern and no flashlight—not even a match. The darkness is suffocating, and you’re terrified. But you keep blindly stumbling. It’s…
Now that the brutal and bruising 2016 Presidential Election is behind us and we’ve waded into the Trump era, maybe we can finally move past some of the most divisive…
No matter what happened in your past or what may happen in you're future, it's no match for you. You are tough enough to handle it. Your inner strength is…
Listen up: Scientists in Japan may be onto something big. They’ve discovered there is a significant correlation between the amount of fat vs. muscle that people have and how it…
Broadway Belts for Pulmonary Fibrosis is a yearly musical and comedy fundraiser to fight pulmonary fibrosis (PF). Created 7 years ago to honor the memory of Associated Press theater critic…
Gorlin-Chaudhry-Moss, or GCM, is an inherited disorder that falls under the umbrella of craniofacial syndromes. While the fetus is in utero, premature closure between bones in the skull occurs, and that…
I read the most AMAZING post—and I mean AMAZING post (I am not kidding! OMG!) written by a woman who has been living with Cushing’s disease for less than 5…
We’ve all walked passed a seeing eye dog on duty. The ability of the dogs (and trainers) to learn and react to so much in a safe way is utterly…
El ha sido presentado en el National Geographic Channel. Le ha dado la mano al presidente Obama. Ha sido detenido por el servicio secreto. Incluso después de todo eso, Jason Dunn sigue…
Ohhh, I've got a spark for discussion. I’m verklempt after reading a post from a 30-something woman who is living with idiopathic pulmonary fibrosis (IPF). First, it breaks my heart…
On January 8, 2017, a man with one of the most brilliant minds of our age celebrated his 75th birthday. This, by itself, wouldn't be particularly remarkable, however the celebrant…
One of the most frustrating aspects of living with a chronic or rare condition is the financial stress it places on patients and their families. Doctor’s visits and prescription drugs…
Before 10 years ago, 40-year-old Cystic Fibrosis Advocate Jillian McNulty generally had her cystic fibrosis in check… so much that coworkers at the radio station for whom she worked for…
Después de ser diagnosticado con una enfermedad rara, a menudo hay un sinfín de preguntas que siguen: ¿Qué voy a hacer? ¿Qué es esta enfermedad? ¿Es curable? Y la pregunta…
Hereditary angioedema (HAE) causes unexpected swelling in the hands, feet, abdomen, and face. HAE can be fatal when the patient has a laryngeal attack, where swelling in the throat makes it impossible…
You can give without loving, but you cannot love without giving. -Amy Carmichael Don't Forget-- It's also National Donor Day. Give one of the ultimate gifts of love this Valentine's…
What at first glance sounded like nothing but good news, the FDA's approval of an Duchenne Muscular Dystrophy drug, has complicated undertones. It was announced last week that Emflaza (deflazacort) was approved…
The first time I encountered him, I stared at him, mouth agape with genuine shock on my face. He could not fail to notice my expression. Thankfully, he didn’t take…
Recent studies show that there may be a new treatment option for people who have specific forms of hereditary early-onset Parkinson’s disease. It’s actually a new twist on an old…
¿Qué pasa si vives con dolor crónico todos los días - y no sólo pequeños dolores, pero dolor de nivel 8 en una escala de 1 a 10? Kirah DeCarlo…
© Copyright 2024 Patient Worthy
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.
