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…
Fine, I’ll be the first one to say it—I’m a cynic. Straight up. It’s a family trait so proudly established that when questioned by a very young Kiki about our…
"It's crazy that apathy can be allowed to cost so many lives" Dear Readers, How many of you are organ donors? How many of you had to pull out your…
Sometimes we look at our problems as if they were wrapped in a web of unintelligible contradictions and absurdity and we take it upon ourselves to unravel that web of…
Soccer star legend and two-time Olympic Gold Medalist, Mia Hamm, whose real name is Mariel Margaret Garciaparra, is rocking the aplastic anemia community by sharing her personal story to inspire…
He descubierto que a través de todo esto, mi hijo ha empezado a preguntar, '¿Cómo puedo ayudar? ¿Que puedo hacer?' En cierto modo, esas son las mismas cosas que le…
Greetings Patient Worthians! This month we are highlighting Amyloidosis, a rare disease that affects organs such as the heart, kidney, liver, the nervous system and more. While there is no…
Happy Rare Disease Week friends! This week we have an exciting article on the first day of Rare Disease Week on Capitol Hill (though technically, the first day was at the…
I'm sure you've heard these popular phrases: Don't judge a book by its cover Looks can be deceiving You never know what someone else is going through until you walk…
Okay, you know what’s funny? I literally just wrote an article "The Paleo Diet and Narcolepsy: What You Need To Know" about a “Paleo Narco,” a young woman with narcolepsy…
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