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.
Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…
Calling all residents of the Mitten State (also known as Michigan) who live with, or care about, someone suffering from dysautonomia or gastroparesis! Sunday, July 10th is the time to party…
I hate the sound of the word “lesion.” I think it ranks right up there with the word “moist” in icky-ness. And I’m willing to guess men with axial spondyloarthritis…
“I can’t even remember the name of that new drug Jo used,” my cousin told me, “but it did help improve the time she had left.” Jo was one of…
A May 25, 2016 article from Pulmonary Fibrosis News reports that Italian researchers are making headway in determining if a person’s IPF is progressing or not (which is in the…
I grew up working in my dad’s retail store and he used to have a saying about customer foot-traffic: They come in bunches, like bananas. Am I the only one…
Having a rare illness often makes people feel isolated and alone. When you feel as if no one understands where you’re coming from—or worse yet, when friends and family act…
If you have a rare disease with no cure, it’s important to live your future today. Bradon Coy, 10, took that advice by travelling all the way from the United…
An on the Bel Marra Health website (you can check it out here), talks about the difference between ankylosing spondylitis (AS) and “just back pain.” (It also says that there may…
With apologies to the website of the same name, I effing LOVE science. I can’t do science but I love how it’s so incredibly complex that it regularly romps right…
Those of you who know your Greek mythology know that Achilles was a mighty fighter in the Trojan War who only had one weak spot: his heel. Apparently his mother…
The Immune Deficiency Foundation (IDF) is a fabulous resource for anyone living with primary immunodeficiencies (PI). On May 12 at 8 PM Eastern Time, the IDF will host an informative…
Continuing medical education courses (or CMEs) are educational events designed to keep medical professionals up to date on the latest information in their fields. These professionals earn credits toward their ongoing…
Pulmonary arterial hypertension (PAH) is a form of high blood pressure affecting the arteries in the lungs and the right side of the heart. The disease is characterized by increased blood pressure…
Sometimes, focusing on creating something positive out of your rare disease/chronic illness experiences can help you move forward. Here are 3 ideas for you to think about or try: 1.…
At first, I howled and wanted to tear my hair out…. I was reading an article about the problems a famous golfer was having with his putting during the PGA…
It’s a scenario that turns veins into ice: your certified healthy infant’s belly swells to the size of a basketball and doctors say he has less than 48-hours to live.…
“Fatal granulomatous disease of childhood.” How’s that for a stunner? In a November 2012 overview article published in the medical journal Hematology/Oncology Clinics of North America (which can be found—with…
I love stories where people get what’s coming to ‘em! No, I don’t mean bad-guys comeuppance stories (although I DO enjoy an occasional one). I’m talking stories of deserving individuals…
Nothing beats a live, in-person connection when it comes to feeling understood—especially when you just want to meet someone who understands your disease because, “YOU HAVE IT, TOO!?!” But, let’s…
HEY KIDS! Are you tired of people not knowing about primary immunodeficiency? Take these 3 steps to teach others what PI means to you: First, THINK ZEBRA! What does that…
Sometimes when we’re feeling low over the fact that there’s no cure for what ails people with combined variable immune deficiency (CVID), it’s hard to remember that doctors and scientists…
I have lost two cousins and a very inspiring friend to idiopathic pulmonary fibrosis (IPF). So I’m very aware that: There’s a genetic component to the disease (if more than…
Lace up those walking shoes—even if you’re “walking” is really “wheeling” in your wheelchair and go call all your aunties, uncles, friends, and complete strangers for their pledge of support:…
OK... I hereby promise to never again make a blonde jokes. Why? Because two blonde sisters, Sam and Alex Kimura, are definitely no joke. They are a powerhouse of promise…
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