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…
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…
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…
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,…
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;…
Cistinosis, una de las muchas enfermedades raras, genéticas en el mundo de hoy ... Como en cualquier buen artículo, el lector primero debe estar provisto de una breve historia del…
En un comunicado de prensa informó de BusinessWire, la Fundación de Investigación cistinosis, CRF, concedido subvenciones sin precedentes de $ 1.022.879 a instituciones de investigación por lo que es posible…
Ahh, el milagro de la vida. Aunque es una cosa hermosa, el embarazo puede convertirse en una cosa cada vez más doloroso para las personas con artritis y enfermedades relacionadas.…
Happy Friday Patient Worthians! PW Contributor Nolan is back in our Video Series with his details on dystonia treatment. We also have some cool info on EDS gadgets! What do pharmaceutical companies mean…
Life is hard. Life gets even harder for a woman once a month. The topic of menstruation always has been sort of taboo. I remember getting my first period. While crying on the toilet,…
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