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…
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…
The above photo is when Cole arranged a virtual race and Facetimed with Hannah. We were in Ohio walking while Cole and her friend Heidi ran in Wisconsin. We even…
“Looking back to the years before being diagnosed, I remember that therapy helped a lot. But I sometimes wonder if I would have had those issues anyway or if it…
Spread the word about Lyme with the Lyme Disease Challenge, then donate to help fight the disease! Take a bite. Share a fact. Pass it on! FACT: Lyme Disease has…
This is the last segment of Mariana's medical journey written by Mariana's mother, Carolina. Click here for part one and here for part two. Before the three month check up…
Okay, you guys, I got a boyfriend! I didn’t think it was possible. I mean, if you have at all been reading my posts through my site TheSickandtheDating.com, you know…
La natación es no sólo un gran ejercicio en general, pero también es un ejercicio fantástico si usted está viviendo con espondilitis anquilosante. No es tan discordante para la columna…
No, no es cinco. "CINCA"! CINCA significa síndrome articular cutánea infantil neurológico crónico. NOMI es sinónimo de enfermedad inflamatoria multisistémica Neonatal. Así es CINCA realmente lo mismo que NOMI? De…
Joel is like a lot of people. For two years, he suffered from back pain that was resistant to treatment. He had physical therapy, medications, and was placed in traction--to…
Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…
Patient Worthy's UK Partner Breath With Me Strawfie Challenge, wants you to know the basics about cystic fibrosis (CF) and how it affects patients and their families. So they made a rockin'…
Most parents spend at least part of their parenting life wondering, “What will I do today that permanently screws up my kid in the future?!” Which to be honest, is…
One of the truest ways to help those with rare diseases is to make people aware of them. The more people who are aware, then more people can donate. The more…
A recent study at the University of Edinburgh in Scotland is showing results that link genetics to certain forms of mental illness. Briefly mentioned was the fact that, although the…
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