Register now to join patients, caregivers, physicians and other advocates from across the country at the exciting events we have planned for Rare Disease Week on Capitol Hill. We are thrilled…
Welcome to the second 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 been diagnosed with…
Conoce a Melissa, una esposa, madre y abogada. Patient Worthy entrevistó a Melissa sobre su #InvisibleIllness - gastroparesia. Hace casi dos años, no-bienvenida y sin previo aviso, la gastroparesia entró…
It's the 'Lil Things.. So we're entering February. I had vowed to a "New Year...New Me." I wanted to find a sense of self worth, find my happiness, and seek…
Soy María; Soy una esposa y madre, fashionista y un entusiasta de zapato. No todos mis días son malos, pero nadie sabe acerca de los días realmente malos porque me…
"Es chistoso. El día que más temía, el día en que te diste cuenta que no ibas a subir el Monte Everest ha ido y venido, y que no se…
Part 3: The Christmas Baby Click here if you missed Part 2 The attention and help that I received from my team of doctors after this moment became applaudable. They…
Mi nombre es Shelly. Soy cristiano, una esposa, una madre y un escritor-autor publicado de hecho, y así es como el mundo me conoce. Pero el resto del mundo, las…
For those of us with rare diseases, the subject of Marinol and other marijuana-derived substances has certainly come up in conversations with doctors, at least in terms of it's pain…
Part 2: Intrahepatic Cholestasis of Pregnancy Click here if you missed Part 1. Before I went through all of this I had the very innocent idea that doctors knew what…
It's said that Nero fiddled while Rome burned--by comparison to a musician in China's activities during brain surgery, Nero had it easy. Imagine jamming out on your guitar while surgeons operate…
The Webster dictionary defines motivation as, "a force or influence that causes someone to do something." So that leads us to ask... What's the force that causes you to take…
2016 has started out pretty rough. Beginning at around noon on January 1st, I had to deal with a very painful pocket of infection just to the left of my…
Part 1: A Terrible Itch—and Unspeakable Loss Everyone knows that I am an autoimmune mess due to an invisible chronic illness comprised of multiple autoimmune diseases. Here is a part of…
Soy Charlie, un joven de 27 años de edad, trabajando en marketing digital en Auckland, Nueva Zelanda. Soy un gran fan de un buen café, buena cerveza, buen vino, buena…
Happy First Week of February! Do you have a rare disease and find art as an outlet for you? Are you always fighting to find more ways to treat your…
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…
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