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.
A friend of mine has a disease that at one time carried the name of a Nazi doctor (it was only changed about 2-3 years ago!). So I suppose “Schnitzler…
“In the pipeline” are words that make the heartstrings of anyone living with a chronic, hard-to-treat disease go twanggggg. It’s Big Pharma lingo for “drugs under development,” and generally signals…
Sometimes a video speaks VOLUMES more than mere words. Maybe that’s why Kaleigh McCormick decided to make a video about her life with Ehlers-Danlos syndrome (EDS). Maybe she made the…
When it comes to getting the care you need for a rare disease like Parkinson’s (PD) or dystonia, the doctor you see is VERY important. In some cases, it’s enough…
There’s nothing quite like somebody who “gets it,” when you’re feeling low because you have Ehlers-Danlos Syndrome (EDS). Thankfully, there are organizations out there created by—and dedicated to—being there for…
Remember the Parkinson’s disease Ice Bucket Challenge mania that spread across the globe? Did you find yourself overflowing with ideas about equally awesome challenges or ways to raise awareness and…
Wanna know one GOOD thing about having a chronic illness like hemophilia? It can help you get a scholarship that might just change your life! When you have a chronic…
Gene therapy is the hot new thing in medicine these days--especially with hemophilia. The good new is, “Yay! There are hot new things in medicine exciting researchers!” The bad news…
Calling all kind and generous people living near Ilminster in the UK! On August 28, Zellweger UK and the Epilepsy Society raised money AND watched a lovely lady get her…
When I see a rubber boat and a headline with “boy” in it, I freeze. Can I bear to see another heartbreaking story on refugees in need of help? Thankfully, this was…
Learning more about your rare disease, like PAH (pulmonary arterial hypertension), can be confusing. Do you find a small support group? A big event? Do they even have those? Yes,…
How much do I love that there’s a Pinterest page called 1000+ Ideas About Ehlers-Danlos Syndrome Products?!? Way to go, EDS community for sharing info, ideas, and support! I found…
If a treatment that would cure me or my child had to use dogs for testing, what would I do? That’s the question I had to ask when I saw…
1. What people I don't know think my Hereditary Angioedema (HAE) swelling is: 2. What my previous boss thinks my swelling is: 3. What the ER thinks my swelling is: 4.…
Props to medical professionals who make the effort to be approachable—and sometimes entertaining. A lot of us appreciate your efforts—even when they just come off as awkward. These two physical…
When you are diagnosed with a serious chronic illness like glomerulonephritis, you enter into an entirely new world. Suddenly, you’re spending time inside buildings most people never even noticed. Almost…
Is it just me, or is EVERYBODY talking about vitamin D deficiencies these days? Suddenly, everyone I know is coming back from their health check-ups with prescriptions to combat their…
Q: What does an autoimmune disease that primarily affects tear glands and salivary glands have in common with a James Clavell novel? A: Nothing, really—other than the fact that the…
The first paragraph of the myasthenia gravis (MG) “Fact Sheet,” created by the United State’s National Institute of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) and posted…
If this makes sense to you, “Hey, look! Some dude on a sponge has wiped out and is going over the falls on a hollow little right!” then you need…
Autumn is going to be a fun time for people interested in supporting essential research for amyloidosis. Amyloidosis is a group of about 15 rare, progressive, and incurable diseases of…
Whether you’ve just been diagnosed with IPF, or you’ve been living with the diagnosis for a while now, there’s one website location that you should get to know: The Pulmonary…
As much as we want the letters DBHD to stand for “Daily Better Health, Dearie,” those very rare people, whose genetic makeup includes a particular mutation, will translate the acronym more correctly…
For some cases of dysautonomia, doctors suggest increasing the salt intake in your diet. Doing so may help raise your blood pressure to alleviate light headedness, and improve fatigue level…
When you have a rare disease, like dysautonomia, the walls of your world can constrict pretty quickly. Chances are good that you’d never even heard of your disease before your…
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