For anyone living with severe chronic pain from Complex Regional Pain Syndrome (CRPS), the best possible gift they could receive—short of a cure—would be a good treatment. To date, however,…
Conozcamos a la colaboradora de PatientWorthy mas reciente! Nikole es una mamá con experiencia profesional en la educación y una increíble visión de las realidades que muchos pacientes con enfermedades…
Share the spirit of healing. Those with rare diseases seek healing all year round. The holidays are for a different kind of healing though, healing of the spirit and soul.…
Whichever holiday you celebrate can be difficult when you're living with a chronic illness. We hope that you feel well enough to enjoy your favorite part of the season and…
Todo el mundo recuerda al chico en la clase que no paraba de hablar el tiempo suficiente para saber que sonó la campana del almuerzo. O la fecha de la…
Para ponerse al día en el viaje de la enfermedad de Lyme de Alexis, echa un vistazo a la parte 1 de su historia aquí. "En mi línea de trabajo,…
Happy Christmas/Hanukkah/Holiday break Patient Worthians! This week, we are highlighting our amazing contributors for all of their heartfelt and honest stories. One post is about how to stay out of…
Yes, it is the season of holidays. Happy Christmahanakwanzika! Or whichever holiday you celebrate! I hope you experience peace, love and joy this season.
‘Tis the season for caring and sharing, and I know of no other mother and family who need it more—not just compassion and care, but also effective treatments for her…
En el sitio web fabuloso estilo de vida Fundación de Fibrosis Quística, blogger Brian Callanan ha emitido una llamada a la acción. Él quiere saber de todos ustedes si usted…
Status epilepticus (SE) is a serious, problematic, frightening, and often fatal condition, relating to uncontrolled seizures that continue to happen without any type of recovery between the seizures. SE is a…
I know I’ve said it before, but whatever, I’m saying it again: 2016 has been an awful year. Both personally and globally, it’s been the total pits, to the point…
If this holiday season finds you with extra love to share, then I hope can share a little bit to help fund research for a rare disease so that others…
’Tis the season to indulge in the spirit of giving. And that’s Kim Fredrickson's exact intention. Kim is an author, blogger, and marriage & family therapist who was diagnosed with…
Cuando veo "Marvel" y una imagen como la siguiente ... ... Veo los ingredientes de un superhéroe! "Un equipo de investigadores en el Trinity College de Dublín ha descubierto lo…
Loss is a terrible thing. It’s heavy and overwhelming, and for me, it’s sometimes such a weight that it can be hard to lift yourself up in the morning. Yet,…
Some more good news to share for people who are living with chronic conditions such as transverse myelitis (TM), a rare condition that strikes the central nervous system as seen…
Hey, a happy holidays meme without using red and green! Here’s wishing you peace and love during the holidays. Even if you don’t celebrate a specific holiday, I hope the…
Every parent here knows that feeling of helplessness when you see your child in pain from a chronic rare disease that has no cure. Sara and her husband have experienced…
¿Sabías que hay más de 7.000 enfermedades raras, y 1 de cada 10 estadounidenses tiene uno? Cuando usted es parte de un pequeño grupo de pacientes, es difícil darse a…
Imagine that one day you have a healthy, lively 5-year-old daughter. Then, in the span of two short weeks she's sick with a fever and rash and then spends 57…
Hansen's disease, formerly called leprosy, is a long-lasting bacterial infection that is treatable with antibiotics. Patients are able to recover from the infection and lead normal lives. The past, however, was…
If you’re like me with a chronic illness, then you have to watch what you eat! Especially around the holidays. I LOVE cranberry sauce but whenever someone else makes it,…
Every year, approximately 6,000 people in the United States are diagnosed with amyotrophic lateral sclerosis, more commonly known as ALS. This disease is a degenerative condition that slowly kills off…
Instituto Franciscano para la Ciencia y la Salud en Steubenville, Ohio patrocina la investigación sobre defectos metabólicos que pueden conducir a trastornos convulsivos relacionados mitocondriales raras. Si bien esta es…
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