I’ve written several articles recently on Cushing’s disease and the difference between it and Cushing’s syndrome—which I felt compelled to do because, I admit, in my own naivety, perhaps like…
When I was young, my grandfather delivered coal. And when I asked, “How much coal did you deliver today, Papa?” He always replied, “A shit ton!” That was Papa’s favorite unit of measurement.…
We all know that receiving a rare disease diagnosis brings along a whole wave of emotions. Relief, anger and fear are just a few. It's very common for people to…
Bitartrato de cisteamina es su nombre, y salvar vidas es su juego. No es frecuente que se escucha una droga conocida como (probablemente debido a las ramificaciones legales) "salvar vidas",…
The MDS Foundation is hosting a free luncheon this November! It will be held at the Craftbar Restaurant at 900 Broadway (between 19th & 20th streets) in New York, NY.…
Scientists in Armenia are partnering with their scientific counterparts at the University of California in Los Angeles to map the genome of the Armenian people. This is an important step…
Dr. Josh Axe, who is a chiropractor, clinical nutritionist, and a doctor of natural medicine, is the founder of Exodus Health Center. You can read more about him and his…
How does a diagnosis of dystonia change your life? Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be…
Have you ever tried to run a marathon? If so, you’ll know how taxing and strenuous the race can be on your body. Now, consider this: What if you had…
What happens if your adrenal glands produce too little cortisol, and perhaps an insufficient level of aldosterone, as well? Addison's disease is the end result and it can be life-threatening.…
Do you experience pain? Weakness? Swelling? Burning sensations? Dull ache over an affected area? Oddly enough, your career may be the source of your symptoms. Not to stir panic but…
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.…
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