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…
Here at Patient Worthy, we can't stress enough how important it is for patients to advocate for themselves. With rare disease, you often have to fight for a diagnosis. But…
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…
Anyone with rare and neurological disease can relate: there aren't a ton of treatment options and there are almost never any cures for our conditions. We often times just have to treat…
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…
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…
Pulmonary Hypertension is a rare and debilitating condition that can prove fatal in as little as three years unless specialized treatment is given. The Pulmonary Hypertension Association has developed an accreditation process…
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…
Recently I have been fortunate enough to be tested for remission from chronic Lyme disease. For those of you who haven't heard of the latest Lyme Antigen Test, it uses Nanotrap®…
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,…
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…
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…
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:…
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