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…
Bearing both common missense mutations ΔF508 and G551D, Briauna was diagnosed with Cystic Fibrosis (CF) as a 10 month old baby. As a child living and growing up with CF,…
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…
Alexis Plofchan is now 22 years old. In parts 1 and 2 of her interview, Alexis detailed her journey with Lyme disease from pre-diagnosis to post-diagnosis and how Lyme changed…
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…
So the more I read about Lyme disease, the more worried I get. With over 300,000 cases alone reported annually to the CDC, we don’t know how many undiagnosed people…
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…
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