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…
Conoce a Amanda! vlog de Amanda (video blog), ShAMANDAgans, le ayuda a mantenerse en contacto con amigos y familiares y compartir su historia. Ella es un ambicioso y alegre estudiante…
Here’s some interesting news for anyone living with ankylosing spondylitis (AS): A growing prevalence in AS around the globe has translated into increased spending on—and development of—more reliable treatments. Persistence…
Between all the murder, betrayal, and Shakespearean-esque drama, no one would say Fox’s breakthrough, musical-hit Empire represents reality. But one can argue the show represents an important step forward for the…
The old saying goes "When momma ain't happy, ain't nobody happy." And we all laugh a bit because there is a trace of truth in it. But what about when momma…
Las víctimas de la enfermedad rara y potencialmente mortal angioedema hereditario (AEH) están levantando banderas rojas debido Australia se está quedando atrás en el diagnóstico y tratamiento de la enfermedad.…
Here at Patient Worthy, we spill a lot of (virtual) ink talking about all aspects of living with a rare disease. Our goal is to be supportive and understanding, a…
May is Lyme Disease Awareness Month. Read more here, be informed and learn how you can be a part of the solution.
In the world of diagnostics and treatment, change is usually a slow, gradual process. But so far, this is turning out to be a damn good year for anyone interested…
Manos amigas pueden hacer cosas realmente sorprendentes. Eurodis, los campeones del Día de las Enfermedades Raras, demuestran esa idea en su vídeo sobre el Día de las Enfermedades Raras del…
Happy Memorial Day Weekend Patient Worthians! Memorial Day is the perfect opportunity to hang out with friends and family, and appreciate the times where life seems somewhat "normal". But before…
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