Mi nombre es Lisa y yo vivo con la artritis reumatoide (AR) y la fibromialgia. #myinvisiblefight está en curso, pero tengo fe, la familia y los amigos. Esta es mi…
Esta introducción a la semana de concienciación sobre las enfermedades invisibles, o como nosotros le llamamos #IIWK15 por sus siglas en inglés (Invisible Illness Week) fue escrita para una publicación…
I realize that as a woman who has been unmarried and dating for her entire adult life, my vocabulary is vastly different from that of someone who has been married…
Postural Tachycardia Syndrome (POTS) prevents the body from maintaining blood pressure and blood flow to the brain and other major organs when a person stands. Here's what you need…
When all else fails and you long to be Something better than you are today I know a place where you can get away It's called a dance floor, and…
Este es mi hijo Oakley, un niño de cinco años de edad con una sonrisa adorable, que ama a las Tortugas Ninja, y usted nunca adivinar lo que hemos pasado.…
Happy almost-Valentine's Day Patient Worthians! What are your plans for this weekend? It's a special holiday-- Valentine's Day, designed for romance! But let's face it, chronic disease isn't always sexy, so maybe…
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,…
© 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.
