5 Tips to Maintain a Healthy, Active Lifestyle While Living With Von Willebrand Disease Von Willebrand disease (vWD) is a rare bleeding disorder, found in about 1 percent of the…
Heather Smith suffered one of the greatest losses known to humanity: the death of her firstborn son, Brandon. He was seemingly healthy until he caught a cold at six months old,…
Dysautonomia is not exactly a rare disease because it affects so many people. So, it's surprising that so little is known about this central nervous system disease, or what causes it.…
The diabetes drug pioglitazone, has an unexpected side effect that brings hope to patients with chronic granulomatous disease (CGD) and other primary immunodeficiency diseases. This drug boosts the production of ROS in…
The last thing any parent wants to hear is that their infant or child has been diagnosed with congenital myasthenia gravis, a disease that causes various degrees of weakness in the…
Living with Cushing's Disease: How Healthy Eating and Exercise Will Help Cushing's disease is a condition that occurs when there is a high amount of cortisol in your blood. This level…
There are 250+ PI Disorders Out There Primary immunodeficiency disorders were once shrouded in misinformation and a general lack of understanding. Many would argue that this is still true today…
Myasthenia gravis is an autoimmune disease of the neuromuscular system, causing muscle weakness in the voluntary muscles of your body. While the causes of myasthenia gravis aren't always understood, it is…
Happy Friday Patient Worthians! Just because Cystic Fibrosis and Lyme Disease Awareness Month is over, doesn't mean we won't stop fighting the good fight for spreading awareness about these diseases! We…
While common in much of the rest of the world, Behcet's syndrome is considered relatively rare in the United States. That offers little relief for those in the U.S. who are…
I grew up working in my dad’s retail store and he used to have a saying about customer foot-traffic: They come in bunches, like bananas. Am I the only one…
Are you a guy with ankylosing spondylitis (AS)? Then you need to know about this study. It suggests that men with AS are at a higher risk of dying from…
What if you had a super-rare disease and thought you were the only one on the planet who had it? What if your medical team suspected you might be right about…
A year ago, Novartis let people know that its drug, secukinumab, had shown positive results in a Phase III study for the treatment of ankylosing spondylitis. Now, the same drug could…
Having a rare illness often makes people feel isolated and alone. When you feel as if no one understands where you’re coming from—or worse yet, when friends and family act…
How do I know if I have Lyme disease? The Center for Disease Control has a helpful infographic showing the most common symptoms from 2001 to 2010. In order from most…
2006: "HAE is almost never suspected as a potential cause of acute pancreatitis." - PubMed.gov 2007: "Pancreatitis is rarely a complication of an acute HAE attack." - The Journal of…
C’mon! Get your friends moving and start walking. We’re taking steps to cure the world of a painful spine disease that can afflict its victims in early adulthood. May 7th…
Press release: 2nd June 2016 Xenia twins urge local community to take the Strawfie Challenge for cystic fibrosis awareness When Heather Scott and Nathan Young received the diagnosis that their daughter Adriana…
For Deborah Cooper, getting diagnosed with myasthenia gravis was the easy part. Everything that spun out of that diagnosis was what really turned her life upside down. It started innocently…
For many patients with Pulmonary hypertension (PH), their path to diagnosis of this rare lung disease starts with the feelings of exhaustion and general fatigue. In fact, some patients may…
Honestly, this is a crazy story-- heartbreaking, too. A young woman was told she had lupus, and spent the next seven grueling years enduring treatment, including chemotherapy and steroids, for a…
Because her life has been defined not just by words, but by The Word, Connecticut evangelical pastor Nancy Butler (Pastor Nancy) has a Bible quotation stenciled in script over the…
When UK cyclist Andrew Beale decided he was going to throw his support behind The Dystonia Society, he didn't waste time getting sponsors. With nearly $400 pledged, he was disappointed to learn that…
Happy Friday Patient Worthians! This week, we have some riveting stories by three PW contributors. Firstly, we have Alexis battling Lyme disease for 8 years and a surprising ending to Part 1…
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