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…
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…
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…
What's it like to live with myasthenia gravis (MG)? Let Olivia Truncale tell you: The 19-year-old college sophomore was diagnosed just over two years ago, shortly after her legs gave…
While I truly believe that people are well-intentioned, their opinions and comments often miss the mark when it comes to what we experience living with dystonia, or any other chronic…
Viviendo el sueño como un futuro de béisbol Destacado, Franklin Gutiérrez, alias "Guti" estaba en la cima del mundo. En 2000 los Indios de Cleveland firmaron al agente libre aficionado…
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…
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…
Viviendo con ICV? Aprendiendo a controlarlo? PatientWorthy te está buscando en Instagram si estás viviendo con inmunodeficiencia variable común, ICV. #PatientWorthy Para compartir sus fotos con nosotros! Y comentar a…
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…
Researchers around the world are constantly looking for new leads in combating chronic illnesses, and they’re making progress all the time. But it’s not often they make a discovery like…
Just how far does the apple fall from the tree? One in 12 people in the Western hemisphere suffer from autoimmune diseases such as juvenile idiopathic arthritis and Crohn's disease. A…
The first of its kind to be FDA-approved, the medication, CINRYZE®, works to prevent HAE attacks in teenagers and adults diagnosed with the disease. In patients with HAE, bradykinin, a…
As anyone with Myasthenia Gravis will tell you, this disease is no picnic. In most cases it’s treatable with immunosuppressive therapies and people can live full—and fulfilling—lives with MG. But…
When most people think of bleeding disorders, they tend to think of Hemophilia. And if they know a little more than the average guy or gal—and let’s face it, if…
El corredor David Brumley fue diagnosticado con Variable Común de Inmunodeficiencia (ICV) en 2008, y pensó ponerse en forma no podría hacer su salud peor de lo que ya era.…
PW Contributor Alexis Plofchan is 22 years old and a student at William and Mary. She and her parents have been fighting Lyme disease for the past eight years. In…
Myasthenia Gravis is a neuro-muscular autoimmune disease that can make the body go weak at any time. If you have Myasthenia or MG like me, you know that some days…
Sometimes I hear people say “I don’t want to be a guinea pig”, “They are not going to experiment on me!”, or similar sentiments regarding medical trials. On the one…
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