Anyone with Parkinson's disease or with a family member who has the disease knows that it can be heartbreaking at times. There are good days and bad days, but the sacrifices that have to…
Hitting up the club? Try hitting up the couch. That’s the reality of life with a rare disease. Forget marathons, Grey Goose, and stilettos. Your life is now Netflix, antacids,…
Si usted está considerando el embarazo, mientras gestionas tu espondilitis anquilosante, es posible que tenga muchas preguntas, tales como ¿Va a tener el dolor de espalda típico que las mujeres…
If you know or are a rare dad who is the parent of a child with a rare disease, or are a rare dad who has a rare disease, tell your story! Shed…
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…
Doctors are trained to look for horses instead of zebras. You may have to inform them that zebras do indeed exist. Sometimes it seems like you are explaining yourself and Behcet's…
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…
When you have a chronic illness, "wild" nights tend to become a thing of the past. No more late nights at the club, hanging out until midnight in the middle…
La espondilitis anquilosante (A. S. por sus siglas en ingles) es una forma de artritis que afecta a la columna, aunque otras articulaciones pueden participar. Que causa inflamación de las…
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…
When you have a rare disease, it sometimes becomes all-consuming. It's hard not to focus on all the things you can't do now, or wish you could return to the…
Low-fat, low-tyrosine recipes don’t mean you have to go light on the flavor. Because children who have to adhere to a tyrosinemia diet cannot eat foods that include meat, poultry,…
Kim Kardashian: one of the most famous women in the world. Why, you ask? I honestly don't know. But due to that fact that so many people know and seem to…
Los médicos de Global Hospital en Mumbai, India, han logrado una hazaña poco común en la cirugía espinal. Por primera vez, un experto equipo de cirujanos realizaron la cirugía de…
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…
Muchas personas con angioedema hereditario (AEH) le dirá que realmente no están seguros de qué causa sus ataques, pero pueden identificar algunos factores desencadenantes comunes, tales como el estrés, la…
Su hermano dijo que el diagnóstico era imposible; Ella no estaba tan segura En febrero de 2006, Sheryl Stein, de Arlington, Virginia, sabía que algo estaba mal. Ella sufría de…
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…
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