If you have Maroteaux Lamy syndrome, there's good news and not-so-good news. On the one hand, an understanding of this rare genetic disease has been reached by the medical community.…
I feel like shouting from the rooftop after reading about this 7-year-old girl named Yasmin. After a long hospitalization that spanned several months, she finally got released because her body…
Let's talk about medical marijuana for a moment. As soon as the word "marijuana" is introduced, people automatically think of users being "stoned," or they think of the fabled hippie…
When most people visualize Huntington's disease, a fatal neurological disease that causes the nerve cells in the brain to break down, the first thing that may come to mind is…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y se presiona el juego cuando comenzó a grabar un video explicativo de su rara enfermedad, con frecuencia mal entendida, variable…
There's an old fable that reminds me, in a way, of primary myelofibrosis, or PMF: A shepherd is in the desert with his camel, and as night approaches, he pitches…
Serendipity (n): la aparición y el desarrollo de los acontecimientos por casualidad en una manera feliz o beneficioso. Como muchos de ustedes probablemente saben, el viaje a un diagnóstico cistinosis…
Es una especie de una insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión a nivel internacional querida. Y tal vez los médicos…
I don’t know what it is about hereditary angioedema (HAE) that makes people with it have a really great sense of humor, but they do. Maybe it’s the absurdity of…
Any of you ever think about running a marathon? I know I have. I've thought about it. Have I run a marathon? NOPE! Sure haven't. That sh*t looks hard. Look,…
Multiple. System. Atrophy. Even if you know nothing about MSA, stringing those three words together doesn't sound promising. MSA is a neurodegenerative disorder that's characterized by autonomic nervous system failure.…
Ok, es el momento para un experimento. Coge un grupo aleatorio de gente de la calle y pegarlos en una habitación (asegúrese de preguntar en primer lugar, por favor). Pídales…
Exercising with CRPS can be beyond difficult, but I’m sure everyone from your doctor to your mother has encouraged you to do it. Why? CRPS already causes you pain, and…
Miracles never cease to amaze me. And quite frankly, it’s been a long time since I’ve been convinced that one actually has happened—although in theory, I welcome miracles every day!…
Primary myelofibrosis is one in a group of rare diseases called myeloproliferative neoplasms, or MPNs. It is characterized by an overproduction of one of the three components of blood: red cells,…
I woke up in an emergency room surrounded by nurses, doctors, and tearful friends. I had no idea how I got there or how long I had been there. I…
Spoonies are strong every day and in spite of a lot. Don't forget that you have a courageous heart <3
In 1964, Henri Hers was studying Pompe disease when he suggested that the absence of lysosomal enzymes could be responsible for several other conditions. He was right, and a category of…
She's young. She's beautiful. And she's living with short bowel syndrome, or SBS. Shante Smith was born with SBS, a disease that renders it difficult for the body to absorb and…
If you have acromegaly, you know that available treatment options are very limited, so when Chiasma, a pharmaceutical company based in Waltham, Massachusetts, received notification that the FDA was not…
Usted no va a venir a través de demasiadas personas en sus vidas como Elaine Gómez y su hija, Michelle DeMont. Y es probable que no se encontrará con el…
Bernie Mac was one of my favorite comedians. He grew up on the south side of Chicago, financially poor but determined to rise above his tough beginnings. "I didn't have to…
En este momento, usted y yo estamos justo en el medio de uno de los más grandes de la historia las edades de información. Tenemos más formas de aprender sobre…
Cystinosis is a metabolic disease in which the amino acid cystine crystallizes and then begins to accumulate in the kidneys, eyes, liver, and white blood cells. Children are typically diagnosed…
In the case of an emergency, we're all taught to dial 911. We all assume that the police, firemen, or EMTs will be able to help us. But what if…
© 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.
