If you have an autoimmune disease, you probably know that there's a lot of overlap between all the different autoimmune diseases, including symptoms, specialists, and treatments (thank goodness for off-label uses…
Alexis Rosen was diagnosed with chronic Lyme disease after much confusion and months of searching for answers. She has since begun IV antibiotic therapy. After (finally) being diagnosed and deciding on a treatment…
When Debra Chiabai helped her good-Samaritan dad volunteer for his charity of choice—Muscular Dystrophy Canada—they both thought of it as a simple, nice thing to do. Many years later, that…
The mistletoe has been unhooked from the ceiling. The garbage man has manhandled your limp tree from your curb into his behemoth monster of a truck. The toys you just…
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…
In November 2015, PatientWorthy sounded off on an article that I really liked called: “A Day in the Life of a Narcoleptic” by Steven Jackson. I applauded (and still do)…
What would you do if you were the parent of a 5-year-old who is diagnosed with an extremely rare, incurable disease that causes vision and hearing loss, various neurological dysfunctions…
In an effort to learn more about neuromyelitis optica (NMO)—a chronic illness also known as Devic’s syndrome or Devic’s disease—I tuned into another YouTube video of a PhD. He'd been…
Welcome to the first of many posts related to Patient Worthy's Video Series! We had the pleasure of interviewing PW contributor Kathryn Ferguson, a mother and a wife, who has…
I have had two major life-altering “incidents” in my life. How each was treated was so amazingly different, it leaves me in a place where advocating for myself and others…
Some teenagers have trouble staying awake in class--but most of them have a fairly normal excuse: they stayed up too late. Then there are teens who actually do have a…
Happy New Year Patient Worthians! This week, we kicked off #NewYearNewYou. We want to hear how you are making 2016 the best year yet! We are also continuing our support for CysticLife's collaboration with the…
It’s happened to all of us. It’s Friday afternoon. You’re at the airport, waiting anxiously by the gate to catch the next flight out. It’s been far too many days…
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,…
If ever there was a “girl next door,” it’s Ashley Coleman, a beautiful, bright-eyed-blonde and very active young woman! She’s got the smile of a Homecoming Queen! Even though Ashley…
Noted Denver saxophonist Clare Church has played with some of the greats, including Tony Bennett, the Temptations, and Dizzy Gillespie, but two years ago something changed. In an interview with CPR.org's…
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…
The Corr family has had a tough year. Tough, sure, but equally as joyous. They’ve been adjusting to life with their year oldest daughter Harriet. Soon after Harriet was born came…
Duchenne muscular dystrophy (DMD) may not sound so bad, but it is. What's so fatal about muscle degeneration? you might ask. Well, the heart is a muscle, so there's that. Luckily,…
Andy Long's mom was sick all her life. She passed away in 1969 at the age of 24. Andy, just 5 years old, was sent to live with his paternal…
Writing 90,000 words is no cake walk for anybody, but Liz Nugent, a top author in the United Kingdom, made it happen despite the challenges that she faces as a…
Lady Gaga was onto something when she penned the lyrics “just dance; it’ll be okay.” Becca Friedman has been dancing her whole life, and despite her life-threatening cystic fibrosis…
Mary Vicencia knows what it’s like to be sick as a dog. For a while, she was basically an expert in feeling downright bad. In fact, she’s a lot like…
“We all need role models who fuel our desire to make the world a better place. Mine is my dad.” These are the opening words of a powerful blog post…
© Copyright 2024 Patient Worthy
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.
