Yowzaaa! You don’t want to miss the article by Jeannette Y. Wicks, RPh, MBA, FASCP about Cushing’s disease (CD). Cushing's is a rare disease that’s caused by high levels of…
Have you ever tried your hand at fundraising--especially for a rare disease like dystonia? If so, you’ll know that it’s difficult because there are so many factors involved. Without a…
When Stephen was growing up, he had no idea he'd one day be diagnosed with Common Variable Immunodeficiency (CVID). As a kid, he had a lot of trouble with ear and sinus problems.…
Living with cystic fibrosis(CF) can change everything. When you hear that someone, whom you love deeply, has been diagnosed with something that is incurable your life changes dramatically. When reading…
"Feliz Mes de la conciencia para la distonía!" Tal vez "feliz" no sea la palabra adecuada ... Porque, mientras que separa la conciencia es siempre algo que celebrar, la distonía…
People with dystonia, may have a new treatment option: brain surgery. Sure, it doesn't sound fun, but according to Dennis Russel, having the procedure for his essential tremor was "a…
If you are one in 1.3 million people, you might be born with a mutation in your CPS1 gene, causing you to have carbamoyl phosphate synthetase 1 deficiency or CPS1D.…
BMC Medicine recently started an idiopathic pulmonary fibrosis (IPF) article collection. It should help educate patients, caregivers, and healthcare professionals by delivering the most up-to-date research and latest advancements in treatment.…
How many 22 year old kids do YOU know who live WELL with a chronic illness? Uh, I can’t say I know many other than one kid who has type…
Now that I've puffed on this piece from the Hippocratic Post, I thought I'd pass it on to you. Mike Barnes, a professor of neurological rehabilitation at Newcastle University, is…
Happy Friday Patient Worthians! We have two intriguing stories from PW contributors this week, detailing their plight with rare disease. Additionally, we have a pretty cool outcome for a pretty cool kid…
Wondering how to make your vitamins rock dystonia? (Not as badass as Chuck Norris, of course.) If yes to the vitamins, then read on! There are multiple forms of dystonia, and…
Kathleen Bissell (wonder if she's related to the vacuum people) wrote about Ernie Els's putting problems during The Masters over on www.progolfnow.com. Why do we care at PatientWorthy? Because Bissell…
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…
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…
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