I read an article about pregnancy screening for disabilities recently. In it, there was one quote from a mom who has Ehlers-Danlos syndrome (EDS), an inherited condition which affects connective tissue and causes…
Conozca a Samanta. Ella ha estado luchando contra una increíble cantidad de síntomas desde principios de 2012. Ella está actualmente diagnosticada con la enfermedad celíaca, colitis ulcerosa, gastritis, neuropatía autonómica,…
Natasha Lipman, a chronic illness blogger, was watching TV one morning, when something rankled her ire. The ITV show, This Morning, was doing a segment on whether or not children…
Simply put, Adam Jacobs’ photos are breathtaking. And it’s quite possible that he never would’ve discovered his talent if he hadn’t picked up a camera as a way to distract…
Mi nombre es Benjamin. Soy el padre orgulloso de un sabueso que me encanta tomar en caminatas. Soy un jugador y una cabeza armario metálico. Estoy 6'2 "y pesa 215…
Patient Worthy recently asked the President of the Acromegaly Association Jill Cisco, what it felt like to have acromegaly. Below is her response. Acromegaly is a disease that affects a person…
You spent years taking piano lessons, spent thousands of hours practicing, and were enjoying your professional career with an orchestra. Then IT happened. Every time you sit down on the piano bench, your…
Personally, I'm a cat person, but I've never had any doubt that Dog is Man's best friend. And this story has pretty much solidified that concept for me. Sam Sutcliffe…
Conoce a Hannah, no puede no darse cuenta de todo lo que ella lucha con mirarla. Ella tiene doce años de edad. Esta es #InvisibleFight de Hannah Con Osteodistrofia hereditaria…
When Jon Miller, president and founder of the Network of Tyrosinemia Advocates (NOTA), learned of a family in Puerto Rico who had moved to Connecticut to get treatment for their…
Are you an adult with isolated cervical dystonia? Wake Forest (Winston Salem, NC) is running a clinical trial of a new botulinum toxin. For more information click here. Or contact:…
Mi nombre es Bonnie y he estado luchando por mi vida durante dieciocho años, pero he estado luchando una batalla invisible durante los últimos doce. Esta es la historia #myinvisiblefight…
Super Bowl 50 is this Sunday! In case you live in a box, the Super Bowl is kind of a big deal. And why shouldn't it be? You take the…
When 63-year-old Donald Castner of Napa Valley, California was diagnosed with idiopathic pulmonary fibrosis, or IPF, it came as a complete surprise. After all, he'd been active and in good health…
To read part 1 of Lisa's post, click here. These are some of my favorite online support for just about anything you need: Have a basic question? These forums are…
Mi nombre es Bonnie y he estado luchando por mi vida durante dieciocho años, pero he estado luchando una batalla invisible durante los últimos doce. Esta es #myinvisiblefight. En 2002, colgué…
You made it! It's the end of the week and time for yet another Editor's Choice post. What do heart failure and narcolepsy have in common? Do you have a…
If you have a diagnosis of Myasthenia Gravis like me, here are a few things you probably already know: 1. They call us Snowflakes because none of our symptoms are…
I’m sure you’ve heard that old saying; a picture is worth a thousand words? It’s kind of a cliché. It’s also kind of wrong. Some pictures are worth far, far,…
We’ve told you before how pharmaceutical companies can be a good source for free disease education online. Because of the way pharma companies have to vet all their materials to…
Mi nombre es Lisa. Soy sobreviviente luchadora del cáncer 3 veces, y estoy viviendo con la enfermedad autoinmune rara Miastenia Gravis. Soy una madre, una esposa y un Consultor Integral…
Soy Carla Fairchild. Tengo cuarenta y siete años, y la familia y la moda decir todo para mí; son yo. Ambos son mi amor, mi vida y mi pasión. Ser…
"Sticks and stones may break my bones But words will never hurt me" Despite the fact that most of us grew up reciting this old adage, by the time we're adults…
Fact: I donated blood before I knew I had Lyme disease, possibly contaminating whoever recieved my donation. I immediately felt guilty once I learned of my diagnosis, even though I had…
2016 Acromegaly Community Bi-annual Meeting, April 29-May 1st Mark your calendars, reserve your hotel room and put a price alert on Kayak.com to attend the Bi-Annual conference of the Acromegaly Community.…
© 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.
