I watched a very cool video that follows one woman’s quest to finally get the answers she needs. Ultimately, it led to her diagnosis and subsequent treatment for Cushing’s disease.…
Hay muchas maneras de lidiar con el estrés. Algunos son saludables, algunos ... no tanto. Para muchos, el tabaquismo es un "gran" calmante para el estrés. No importa que probablemente…
Would you let a diagnosis of dystonia turn you inside out? Could it make you forget how to see the good in life? It may be time. Time to cue…
Kudos to the Cystic Fibrosis (CF) Foundation for building a mighty network of care centers for CF patients all across this great nation of ours! The Foundation has set forth…
You've gotta love it when someone takes a bad situation and makes the very best out of it. Jake Silverman and his family have done just that. At 10 years…
How many times did a blockbuster movie speak to you? There are profoundly important relationships forged between motion pictures and human behavior. Motion pictures do not have a fixed pattern…
One of the first things every set of parents does when their precious baby is born is start looking for which traits have been handed down. Does she have her…
Piensas que el radón es un gas peligroso? Piense otra vez . Durante miles de años, las culturas de todo el mundo han estado utilizando aguas termales para curar todo…
Two years ago, my phone rang in the middle of the night and our journey with heterozygous familial hypercholesterolemia, or HeFH, began. My immediate thought was I'd won the Publisher's Clearinghouse Sweepstakes…
Schnitzler syndrome was initially identified in the 1970s. Patients usually have fever, bone and joint pain, fatigue, anemia, enlarged liver and spleen, and a strange rash. The rash is resistant to…
Mental health is a sensitive topic for many people with dystonia since a lot of cases are initially mistaken for a psychological condition. In the vast majority of cases, dystonia is a neurological…
When it comes to getting the care you need for a rare disease like Parkinson’s (PD) or dystonia, the doctor you see is VERY important. In some cases, it’s enough…
There’s nothing quite like somebody who “gets it,” when you’re feeling low because you have Ehlers-Danlos Syndrome (EDS). Thankfully, there are organizations out there created by—and dedicated to—being there for…
Tres hurras! GRACIAS Universidad de Kentucky, Addgene, y la Universidad de Pennsylvania Esperamos y esperamos y esperamos a que la investigación aportara descubrimientos con el tiempo. Pero estas tres instituciones…
We all need to cheer and whoop it up for these two brave women who suffer from Ehler-Danlos! Brooklyn Mills and Erika Crawford, who are living with the condition, decided…
When I first heard the term "mycosis fungoides," I immediately thought it was a condition related to some type of fungal infection. Boy, was I wrong! It's actually a slow…
The WDA have over 1150 participants for this year's Big WOW! happening October 1st in cities all across North America. If you haven't had a chance to sign up, now's the…
This is outstanding: However, be prepared because what I am about to say may not be popular, but it's my truth. It breaks my heart that adults with rare disease…
When I was first diagnosed with Behcet's disease, I did a TON of research. And not just any old WebMD research either. I went to the big names, the legit sources:…
In 1980, Dewayne Rettig, then 22, was proudly serving his country in the US Air Force. Stationed in Germany, he had no idea his life was going to change forever. One night,…
Alan Cassels es un investigador de la política de drogas que, en la edición de agosto de la revista Common Ground, escribió acerca de cómo las empresas y los vendedores…
Maroteaux-Lamy Syndrome, also known as mucopolysaccharidosis (MPSVI), is a lysosomal storage disorder. It's one of a number of disorders that affects specific enzymes in specific locations. The job of these…
Hey Patient Worthy Community! Did you you know that September is Rheumatic Disease Awareness Month (RDAM for short!)? Well, now you do! Don't feel bad if you didn't know. This…
I shared it with my family. I shared it with my wife, my mother and my brother of course, and they were grateful that it wasn’t something that was going to…
Imagine you're a new parent and your two-month-old starts experiencing some bizarre symptoms. Along with his high fever, his skin turns red and starts peeling at an alarming rate. Multiple infections follow;…
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