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…
I’m not sure I’m completely tracking this article on how to stay safe from Lyme disease. Don’t get me wrong, I totally get that she’s writing an article about how…
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.…
The Myasthenia Gravis Foundation of Illinois is hosting the 2016 Strides Against MG Walk. This will be the foundation's fourth year hosting, so needless to say, they know what they're doing.…
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…
Cystinosis is most often diagnosed before the age of two. Through medical advances over the last 20 years the prognosis for those with cystinosis has improved. Now more and more…
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.…
Share this flyer with anyone you know suffering from myelodysplastic syndromes (MDS).
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.
Part of the symptoms, when you go back online and you look at some of the classic people that have acromegaly, the one that pops immediately is Andre the Giant.…
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…
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