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.
Ya know that “I’ve Fallen & I Can’t Get Up" joke? When you have postural tachycardia syndrome (POTS), jokes like that wear thin really, really, REALLY fast. What is POTS? Have…
Here at Patient Worthy, we believe in the power of patients. We know that sometimes information you get from someone who shares your disease is exactly the information you need. Hearing another…
Has your physical therapist been suggesting standing like a superhero as a cortisol-lowering treatment for your complex regional pain syndrome (CRPS)? Well, s/he might just be slumping her or his…
You may hate that these days everything seems to turn pink for the whole month of October. Or you may appreciate efforts to associate the color pink with Breast Cancer…
Recently, while looking for information about precocious puberty, I discovered a very cool site. It has a surprising, on-the-surface name: Hippo Education Blog (Apparently, Hippo’s short for Hippocrates, the Greek…
Besties are… well… the best! Lauren Smith just earned a Best of the Besties award for friendship by deciding to run in the Marathon de Paris 2017 on April 9,…
The Model-T. T-Shirts. T-Rex. Lots of really good and/or interesting things feature the letter T and a hyphen—including, if you have pulmonary fibrosis (PF), rare T-cells. Pulmonary fibrosis literally means…
What makes a complex subject like postural orthostatic, tachycardia syndrome (POTS) easy to understand? For me, good intentions are a large part of the equation. That’s one reason I had high…
When you’re dealing with the intense, unrelenting pain of complex regional pain syndrome (CRPS), patience can wear more than a wee bit thin. Also, it’s hard to concentrate when dealing…
When it comes to evaluating websites to help you cope with how postural orthostatic tachycardia syndrome (POTS) affects your life, what’s your approach? Here’s what I look for (in order of…
When your body has to work extra hard to breathe because of lung issues such as idiopathic pulmonary fibrosis (IPF), help it out by “eating healthy.” Digesting big, heavy meals…
I know it’s perverse, but the second thing that popped into my head when I read about iron-based proteins and ALS, was a toy I loved as a kid. There…
“In the pipeline” means something pretty special for people living with rare diseases that have no cure, such as neuromyelitis optica (NMO or Devic disease). Far from the divisive protests…
The human body is an amazing system, when you really stop to think about it. Just taking a breath takes millions of processes—from chemical reactions to mechanical activities and more—working…
I don’t know what it is about hereditary angioedema (HAE) that makes people with it have a really great sense of humor, but they do. Maybe it’s the absurdity of…
Those of us with Gaucher disease who know how much uncertainty, fear, and anger enzyme replacement treatment (ERT) shortages cause, REJOICE! Researchers have found that the oral substrate reduction therapy…
You may not know Erynn Carroll, but on 5 November 2016, she’ll be taking a step in the right direction—and you can, too! If you live anywhere near Central New…
About a year ago, at the American Academy of Rheumatologists Annual meeting, there was a report presented about tofacitinib (TOFA) for the treatment of ankylosing spondylitis (AS). Tofacitinib (sold as…
If you live near La Jolla, California and have Complex Regional Pain Syndrome (CRPS)—or are a care partner for a person who does—here’s your chance to make a difference! There’s…
If you’re a fan of the TV show MasterChef USA, you may remember Christina Ha, the contestant that cooked her way into our hearts—and into the winner’s circle!—despite the fact…
Wouldn’t it be nice if you could talk to one of those “nationally known” specialists about your aplastic anemia? Well, if you can make it to West Palm Beach, Florida…
Looking for great ways to raise awareness (and, therefore, money) for trigeminal neuralgia? Light up your teal lights? TEAL lights…. as in the color. ‘Cuz if pink worked wonders for…
Is hosting a fundraising event meant to help people who have bone marrow failure diseases, such as aplastic anemia, at the end of October brilliant or insensitive? During the last…
“Healing is a matter of time, but it is sometimes also a matter of opportunity.” – Hippocrates, Greek physician known as “The Father of Modern Medicine” When you’ve been diagnosed…
When you have a rare disease such as Fabry disease, it’s easy to feel alone. As reported on the National Fabry Disease Foundation’s website, no one really knows how many…
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