Have you ever gone to WebMD's symptom checker for a simple pain in your stomach or a weird patch on your skin? I know I have, and more often than…
Toronto street artist, Victor Fraser, is on a mission—and that mission recently took him to Paris. In the wake of the November 2015 terrorist attacks that left 130 dead and…
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…
One of the toughest parts of living with Sjögren’s syndrome is you can’t always toddle down the road to your local Sjögren’s patient get-together. There are no flashing neon signs…
First things first. If you're in the U.S., Sjogren's is pronounced thus: SHOW-grin's. And because the physician it's named after was Swedish, there should be little dots above the "o": Sjögren's.…
Although I’m no “spring chicken,” I still grapple daily with the reality that innocent babies get sick and die, or that they don't die, but they languish and suffer; it’s…
There's a pretty large handful of primary immunodeficiency disorders, but we're only going to focus on one: chronic granulomatous disease (CGD). I know what you're thinking... What the heck is…
Not many people would consider a heart attack to be a positive event, but for David Collings that's exactly what it turned out to be. While out walking with his…
Ever heard that blood is thicker than water? Not only am I sure the National Hemophilia Foundation (NHF) has heard it—they’re essentially creating a movement around it. And it’s pretty…
Kudos and congratulations to TV station, KCRA 3 for heading up a special blood drive! They put the spotlight on J.J. and Carson Huish, twin boys who have Severe Combined…
Well, the French are at it again—thank goodness! French pharmaceutical company AB Science, announced in 2015 that it hit its endpoints in a phase lll clinical trial for human subjects who…
Hello Again Patient Worthians! This week we are highlighting part TWO of a story about a man with cystic fibrosis, racing for his non-profit RaceCF and to spread awareness of exercise therapy…
The lymphatic system is the body's first line of defense against disease, so when lymphatic cells suddenly begin to multiply and overwhelm the immune system, it might be diagnosed as Castleman…
Say all you want about the threat of robots taking over the world—technology is making lives easier for those of us who are human. And humans who suffer from ankylosing spondylitis, psoriatic…
The online Women’s Encyclopedia, had an interesting article about Severe Combined Immunodeficiency (SCID) and I’d like to share some of the highlights: Fast Facts That EVERY Parent Must Know SCID…
Most researchers like to say that their work is “groundbreaking” or “revolutionary.” And most reporters—whether print or digital—like to use those words too, because they help get people’s attention. But…
While this information is great, there is still not enough known about Behcet's and its causes... A disease forecast report for Behcet's Disease was recently released by Research & Markets and further…
Do you consider yourself a happy person? Are you cheery all the time? Most of us are not, regardless of who we are or the conditions we may have—with or…
So, your child has just been diagnosed with common variable immunodeficiency, or CVID. You probably have A LOT of questions, which is only normal. Doctors can be a great resource when it…
Primary Immune Deficiency Diseases, or PIDDs, affect approximately half a million Americans, but there's a twist: There are over 200 different PIDDs, all of which are genetically passed along. Finding…
How much do you know about Gaucher disease? If you live with the condition or know someone who does, you might know a lot. But have you ever tested your knowledge?…
TLC launched a new show less than a week ago that is of particular interest to the rare disease community. Their series “Two in a Million” builds off a concept…
Health insurance. Ew, right? Totally. Health insurance is WHACK. Why you gotta know about health insurance right now? Mkay, I'm done with that. How was it, though? The lingo? Did I appeal…
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.
