Welcome to this week's Editor's Choice! You won't believe this woman's story of waking up in a morgue because her rare disease wasn't recognized. And one of PW's contributors finally gets a…
It’s a terrible thing to lose someone. There’s no getting around that. But some people can take loss and find new purpose. For Eric Marder’s family, that purpose became Eric’s…
As most people with narcolepsy are probably aware, current treatments are designed to help manage symptoms rather than treating the underlying cause of the condition itself. Recent advancements, however, have pinpointed…
Florida resident, Brian Jackson’s, life changed dramatically when he was 15. That’s when the active high-schooler first started experiencing unusual and terrifying symptoms. First, he stopped being able to write…
Uno pensaría que en el mundo actual de la tecnología, estaríamos delante de la curva, especialmente en lo atinente a las pruebas de diagnóstico / pronóstico. Lo que pasa con…
Part 1- A Patients’ Perspective on Healthcare in America-The Good and the Bad Patient State of Union Lisa D recently spent the week in Washington, DC listening to some staggering statistics…
Patient Worthy is celebrating March as Narcolepsy Awareness Month! Narcolepsy is far too often misdiagnosed and left undiagnosed for years at a time. With more awareness will be more correct,…
2016 Rare Disease Week on Capitol Hill. Amid all the medical experts, pharmaceutical executives, patients and patient advocates, there's a boy of 10. He sits quietly during the long hours,…
I just read an interesting article that explains how individuals with active Acromegaly have less fat and more muscle than those without Acromegaly. They also have more GH and perhaps IGF-l (a growth factor not…
March 12th, 2016 is Suddenly Sleepy Saturday, a day to help spread awareness about people living with narcolepsy. I’m heartened to learn about this campaign, because far too many Americans…
Complex regional pain syndrome (CRPS) is a condition characterized by prolonged or excessive pain together with changes in skin color, temperature, and/or swelling in the affected area that can be…
Conozca a Brittany Brittany estaba desanimada después de ir a un restaurante y tener que aguantar que la camarera la ignoraba por completo cuando los sintomas de su distonía le hician difícil enunciar. Después de…
The European Organization for Rare Diseases awarded Actelion Pharmaceuticals the EURORDIS Company Award 2016, for their research and support of patients with Pulmonary Hypertension. “I am very proud that, together with…
Huntington's disease is a heartbreaking condition that causes brain neurons to deteriorate. People with Huntington's lose motor control, have involuntary motions (chorea), and decline mentally. At this time, there is…
above photo by Sandro Georgi Photography Throughout March, Patient Worthy is supporting the narcolepsy community in publishing all about living with narcolepsy and the #narcoleptictruth. The 2016 theme for Sleep Awareness…
Parents who have children with rare diseases know the struggle of seemingly innocent questions and conversations. "How is your child doing?" "Why can't your child play today?" "How strange! He/she was…
Acromegaly.care will be hosting an acromegaly patient webinar on Wednesday, March 16 from 12:00 – 12:30 p.m. EST. The webinar will feature acromegaly patient Casey, and research coordinator Lisa Mitchell from…
Patient Worthy asistió al foro anual organizada por la Fundación EveryLife este pasado martes en Washington, DC. Fue un taller de día completo acerca de por qué la incorporación de…
Ping pong can be added to the list of physical activities that aid Parkinson's patients with the debilitating effect of the disorder. And unlike some solitary exercise like walking on a…
Adrenal insufficiency, where the adrenal gland does not produce enough of certain hormones, like cortisol, is the cause of a very rare condition called Addison's disease. And Lita Newdick knows…
Sleep health is vital to living well and being "healthy". The effects of sleep deprivation are real and can be devastating. Check out this video from neuroscientist Dr. Claudia Aguirre via…
Picture this: Little ol' you enjoying a night at the theater. Mid-movie, you drop to the ground, completely paralyzed. Your limp body looks lifeless; but you can still hear and…
Narcolepsy and the military? Not so fast. It's pretty common knowledge that narcolepsy is one of those medical conditions that will prevent you from enlisting--and could very likely lead to…
El tiempo se acaba! Únase a nosotros antes de septiembre termina de hacer el noveno mes del Mes de Concientización Distonía. Si no lo ha hecho ..... #signtheDAMpetition Blogger invitada: Pamela…
I once confessed in an article on this site that I hate dancing because I'm not particularly good at it. Well, now I have another confession: I'm also terrified of…
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