Hansen's disease, formerly called leprosy, is a long-lasting bacterial infection that is treatable with antibiotics. Patients are able to recover from the infection and lead normal lives. The past, however, was…
If you’re like me with a chronic illness, then you have to watch what you eat! Especially around the holidays. I LOVE cranberry sauce but whenever someone else makes it,…
Every year, approximately 6,000 people in the United States are diagnosed with amyotrophic lateral sclerosis, more commonly known as ALS. This disease is a degenerative condition that slowly kills off…
Instituto Franciscano para la Ciencia y la Salud en Steubenville, Ohio patrocina la investigación sobre defectos metabólicos que pueden conducir a trastornos convulsivos relacionados mitocondriales raras. Si bien esta es…
The next time you’re having a crappy day, think of the 1000s of kids across the globe who are suffering because they have juvenile idiopathic arthritis (JIA). JIA is one…
When you’re dealing with the intense, unrelenting pain of complex regional pain syndrome (CRPS), patience can wear more than a wee bit thin. Also, it’s hard to concentrate when dealing…
Happy Holidays! Many people spend their time running around trying to bake as much as they can, buy and wrap as many presents as they can, go to as many…
Could the microbes and flora of your stomach be responsible for the lower back pain you’ve suffered from since your college years? If the latest studies are any indication, your…
Most of us know what it is like to have bad news come our way. And in the course of life, all of us will feel the sting of news…
Most people have become a little annoyed over all the strange news about the Presidential Election. I do think that many hot social issues have come up despite all the nonsense. Our country has…
'' Mover a la costa oeste ha sido tan divertido; Tenía mi pueblo, mi equipo de vuelta al este. Tuvimos una clara mano corta y tengo la suerte de que…
Para cualquier persona que todavía está dudando Disautonomía y POTS, yo he llegado con lo que llamo el Challenge Trick Disautonomía Parte. Por favor, ver mi video y probarlo por…
A los 23 años, Jessie Brenholt debe ser ocupado planeando el resto de su vida, como el matrimonio y tener una familia. En su lugar, el graduado 2012 de Le…
Just over a week until Christmas and Hanukkah everyone! I am counting down the days until the celebrations begin with friends and family, which albeit can be stressful with chronic…
As the wild, fractious year of 2016 claws it’s way to the finish line, we could really, really, REALLY use some good news. In a year that took away so…
As someone who's supposed to take medicine at the same time every day, I'll admit it's not always easy. It's not hard per se... things just get in the way. If…
Wendy sits at the corner of a polished conference table. She’s timid by nature—a little mousy. Her voice squeaks out responses as she participates in the discussion. The conference she’s attending…
Last summer, I was sitting on my deck, reading the NY Daily News (don't judge me; I've been reading it since I was six years old), and I came upon…
Podemos estar de cara a la temporada de vacaciones, pero no hay Ho! ¡Ho! ¡Ho! en HFHo. La mayoría de la gente ni siquiera se puede decir que, por no…
It is a truth universally acknowledged that it's never easy having a rare disease. From Behcet's disease to cystinosis to idiopathic central precocious puberty, we all understand the pain, frustration, and…
What is it about inspiration? Where does it come from? If you are living with idiopathic pulmonary fibrosis (IPF), you may want to feel moved, and then to use that…
I’ve been there. You’ve been there. We’ve all been there. And I’m thinking it’s a safe bet to say that we all hate it. We all know the feeling. When…
Okay, I’m about to start this article with a very microcosmic example of a much larger medical solution. A couple of weeks ago, I was following Ray Charles’ lead and…
Es una especie de insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión quira a nivel internacional . Y tal vez los médicos…
"Success largely depends on two factors. Number one is each individual person's decision to take action. Number two is our interaction with each other and support of each other in…
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.
