The Green family is trying to raise money for their daughter's life-saving surgery and it's now becoming a race against the clock. 18-year-old Ylena Green is suffering from Ehlers-Danlos Syndrome,…
It had never even crossed my mind that there was a connection between my bruised skin, clicking jaw, Sally Hansen's strengthening nail polish, the blue skin on my hands in…
Happy Friday Patient Worthians! This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more…
Rebecca Wanosik was already a pro when it came to being a mom. Zedyn was her fifth child. She knew to trust her gut when, three weeks after her baby…
Raise your hand if you like Adele, the English singer-songwriter! Well, hopefully, your hand is raised, but if not, that’s okay too. I’d still like you to consider Adele’s actions…
#DazzleVegas Adult early-bird registration: $299, ends July 7 Regular registration: $349, July 7–August 28 Junior Zebra Registration: $175
Ehlers-Danlos syndrome (EDS) is incredibly diverse in its symptoms, and most of the time patients don’t have all of them at the same time. Additionally, it’s a spectrum condition so…
Ever wonder what it’s like to be so sick and disabled that you can’t live a normal life but you aren’t sick or disabled enough to actually be considered disabled?…
It has been said that there is strength in numbers, and we are much stronger together! That’s probably why I connected with Shira Strongin, a young teen who lives with…
It's Frida-yay Everyone! Celebrate it by catching up on this week's Editor's Choice. 'Tis the season of giving and we have a heartbreaking story on a case of gastroschisis that will…
If you have Ehlers-Danlos Syndrome (EDS), life can get a bit complicated. Between doctors not knowing what you have to trying to figure out what treatments to use, it can…
Happy Thanksgiving Patient Worthians! We hope you are recovering from big meals and continuing to spend time with family this weekend. Editor's choice this week focuses on gratitude expressed by our…
Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter's life. Her family…
How would you respond if your body did not work for you but against you? What if you felt that your body was actually your enemy? For people with Ehlers-Danlos…
Happy Post-USA Election Day Friends! TGIF Patient Worthians, am I right?! Hopefully this weekend is full of rest, relaxation and positivity! Maybe just avoid social media for a while and hang…
Have you been looking for a resource on Ehlers-Danlos syndrome (EDS)? If so, you'll know that it's difficult because EDS is a rare inherited condition, and there aren’t many credible resources to…
I’ve gotta hand it to this German gal named Karina, who posted an article about her journey living with Ehlers-Danlos syndrome (EDS), a chronic illness that affects connective tissues in areas…
I have to admit that I had tunnel vision when it comes to patient advocacy. I naively thought that everyone was direct and honest with their doctors. I believed that…
Happy Halloween Weekend Patient Worthians! PW Contributor Tom has two of the most popular posts this week! In one, he gives us a surprising outlook on dystonia. Additionally, he talks about…
I read an interesting article posted on Living the Diagnosis by Vicky Warren. I’ve got to applaud her for sheading more light on Ehlers-Danlos syndrome (EDS), a genetic rare disease/syndrome.…
If you were at a cocktail party and someone happened to mention they have Ehlers-Danlos syndrome, how would you respond? Would you deftly swirl the wine in your glass, pretend there's…
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…
We all need to cheer and whoop it up for these two brave women who suffer from Ehler-Danlos! Brooklyn Mills and Erika Crawford, who are living with the condition, decided…
Happy Friday Patient Worthians! PW Contributor Nolan is back in our Video Series with his details on dystonia treatment. We also have some cool info on EDS gadgets! What do pharmaceutical companies mean…
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.
