EmpatheticBadass is a young-at-heart writer from Ohio (Go, Bobcats & The Marching 110!)) who is passionate about being a voice for the patient perspective.
In this election year, a good way to practice being politically active is to write a letter supporting a bill with the catchy name Orphan Product Extensions Now, Accelerating Cures and…
What would you do if you were alone at work or on the street or at home and you fainted? What if it happened frequently because you had a…
Florida resident, Brian Jackson’s, life changed dramatically when he was 15. That’s when the active high-schooler first started experiencing unusual and terrifying symptoms. First, he stopped being able to write…
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.…
In the “As If Chipotle Didn’t Have Enough Problems Department,” they allegedly just did another scummy thing. So here’s the Chipotle Edition of How To Make An Enemy Of The…
He’s a cop who works three additional part-time jobs to make ends meet. She’s a homemaker now, taking care of their three children, ages seven, three and a half, and…
Anyone who’s ever been in a wheelchair or knows someone who has, knows the frustration of “you can’t get there from here.” All you want to do is live your…
In a post just in time for last year's Sjögren’s Awareness Month, blogger Michelle Traub, who happens to have Sjögren’s herself, offered seven tips she uses to live everyday with a…
I read an article about pregnancy screening for disabilities recently. In it, there was one quote from a mom who has Ehlers-Danlos syndrome (EDS), an inherited condition which affects connective tissue and causes…
Simply put, Adam Jacobs’ photos are breathtaking. And it’s quite possible that he never would’ve discovered his talent if he hadn’t picked up a camera as a way to distract…
An article posted on the Cystic Fibrosis News Today site, piqued my interest about what’s happening in the world of cystic fibrosis, or CF, lung transplantation these days. According to the Cystic…
A college class in solo performance, taken during his senior year, changed Brennen Reeve’s life. Why? It was the first time the now 24-year-old ever really shared his experiences with cystic…
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…
We at PatientWorthy are always on the lookout for ways to make living with a chronic illness easier. And we’ve heard about new technology that might just be a godsend…
One thing that almost every person living with or caring for someone living with hereditary angioedema (HAE) knows is that over time... No one knows more about hereditary angioedema than those…
Can you imagine being only 7years old and having painful, unexplained, and reoccurring swelling on all parts of your body? How scary it must be to have your face, feet, legs,…
So…. As a dog fanatic, reading the Wall Street Journal headline “Why Dogs are Some Scientists’ New Best Friends” gave me the heebie-jeebies at first. I’m the kind of person…
If you have been anywhere near the hereditary angioedema (HAE) community, you may have seen or even asked a question similar to the one regarding the gender differences in the…
You know a person living with a chronic illness is giving you the REAL story when, after being asked, “What does your Cushing’s disease affect?” she (in this case the…
Sometimes, when we're caught up in the fear and uncertainty caused by unexplained symptoms, we can forget that doctors aren't god-like machines. Even when you feed them the right data,…
There really ought to be a Walk of Fame for people who have rare diseases. Possible categories might be: “Number of Misdiagnoses I Survived” or “Number of Doctors Who Thought…
Hey, want to know how to really ruin the day for someone living with excessive daytime sleepiness (EDS)? Just tell them “Oh, I get tired a lot too.” Apart from…
On the fabulous Cystic Fibrosis Lifestyle Foundation website, CF blogger Brian Callanan has issued a call to action. He wants to hear from all of you whether you are reactive or proactive…
Dominick “Dom-the-Bomb” Lukowski has always loved baseball. But during his freshman year in high school, he was shocked to notice that he barely had the strength to throw a ball…
When lives hang in the balance, should the needs of a few trump the bottom line? That question was all too real for one Australian mother, Shanna Druisi. As reported in…
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.
