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…
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…
Happy June!—a month dedicated to spreading awareness about myasthenia gravis (MG) and other neuromuscular diseases. MG affects nearly 20 people in every 100,000 around the world. One of those people…
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…
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…
Patient Worthy had the privilege of attending the Acromegaly Community Conference in Chicago April 29th –May 1st. We met some incredible people (stories to come), learned some valuable information (risks of…
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…
Would you climb 1,776 steps to raise money for charity? What if you were in a wheelchair? Julian Backhouse is in a wheelchair, but that isn’t stopping him from climbing…
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…
Brie Peters is 25 years old and has been living with Cystic Fibrosis since she was 10 months old. This is Part 2 of her interview. Exercising had become an…
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…
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