In today’s research world, the practice of teamwork has gained in popularity. This is especially true for researchers who work to better understand Neuromyelitis optica (NMO). NMO is an uncommon…
It is hard to study rare diseases because there are so few people with them. Patients are scattered all over the world. Many are children. Many cannot travel. How to make…
GSK and the National Institute of Allergy and Infectious Diseases have some good news released on Thanksgivng Day and its name is Nucala. Vasculitis is a tough and not fully…
OMG. It’s a Friday afternoon and as I’m sitting here, my heart is breaking for people with neuromyelitis optica, a very rare disease that use to be considered a rare…
Holy. Frickin’. Crap. I’m going to admit right off the bat: I know less than nothing about mixed martial arts in general and the UFC in particular. I wouldn’t know…
Children can be cruel. It's an age-old saying. I don't feel it excuses the behavior, but it is often offered up as a reason for the seemingly heartless behavior children…
Imagine being healthy one day, then hospitalized the next, and your way of life irrevocably changed? For many people with short bowel syndrome (SBS), that is exactly what has happened…
Most everyone these days has heard about multiple sclerosis (MS) but aren’t so familiar with neuromyelitis optica (NMO), which is also called Devic’s disease or Devic’s syndrome. What’s so important…
The kid who sat behind me in high school chemistry class most likely had obsessive compulsive disorder, more commonly called OCD. I say this because whenever he was asked a…
Puedo parecer "bien" para que en el exterior, pero lo que estoy experimentando en el interior no es "fina". Tengo un par de diferentes formas de una enfermedad incurable llamada…
Debido a que es Acción de Gracias, el equipo de Patient Worthy me pidió que compartiera mis pensamientos en la gratitud. Algunos de nosotros podría pensar que sería una tarea…
Happy Thanksgiving Patient Worthians! We hope you are recovering from big meals and continuing to spend time with family this weekend. Editor's choice this week focuses on gratitude expressed by our…
The Narcolepsy Article of Your Dreams Some people would give anything to be able to get take a nap or just fall sleep whenever they wanted to. But that is…
How often may we get the chance to hear about how a doctor feels in dealing with their own chronic conditions? Not very often, right. Well, watch this interview from…
You wake up from a full night's sleep. You begin your daily routine: Get dressed, brush your teeth, comb your hair... and suddenly you have no more energy to do anything…
A recent study suggests there may be relief for dry eye sufferers. Researchers at the Scripps Research Institute found promise in introducing regenerative cells to the gland responsible for tear production. The…
dolor colosal. hinchazón de mamut. Hipersensibilidad. Los cambios drásticos en la temperatura corporal. Imagínese estar en ese tipo de dolor todo el tiempo. Francamente, suena un poco como una pesadilla.…
"Every moment on this earth is an extraordinary, destiny defining gift from God." –Billy Cox Happy Thanksgiving Patient Worthians!
Patient Worthy is wishing the very best Thanksgiving to our U.S. readers. Even if your meal isn't traditional, or is accompanied by a regiment of medications, we hope that you…
Having a rare disease is exhausting on so many levels. The pain, the lack of sleep, the lack of money, the doctors’ appointments… Where is the fun and the spontaneity?…
Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
"As Long as you're still breathing, There's still a purpose for your life." - Billy Cox I find these words very inspiring and comforting. Even when you question why you…
Have you been looking for a treatment for factor XIII (FXIII), or fibrin stabilizing factor, deficiency? You may be among the estimated one in 3 million people suffering with lifelong…
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
Para muchos, como yo, las vacaciones pueden ser agridulce, ya veces duro. Todos los días, me siento agradecido por las personas que forman parte de mi vida. A veces, sin…
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