Hace 13 años, después de haber sido diagnosticado con una enfermedad crónica, Lisa Copen no podía dormir. Ella estaba tratando de encontrar la manera de manejar su nueva normalidad. Ella…
What strikes me about artist, David Mortimer's, exhibition is his use of "glitter." "[Glitter] is a symbol of my life in a way. It's about trying to cover up, glamorize,…
Rare Disease Day 2016 is almost upon us! Rare Disease Day is an international movement organized by Eurordis and supported by 41 Official Global Partners. Whether official or not- Patient Worthy…
Nancy is a breast cancer patient and these are five lessons she's learned throughout her treatment, applicable to anyone who has faced the adversity of being a patient: Attitude of gratitude.…
CYSTIC FIBROSIS PATIENTS VOTE FOR ALTERNATIVES TO TRADITIONAL TREATMENT CysticLife partners with researchers at Mayo Clinic to study if exercise can replace therapy 1x per day Phoenix, AZ: Fed…
Dolor colosal. Hinchazón gigantesca. 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. Bueno,…
Eurodis' Rare Disease Day is only a month away! The beauty of this honorable day isn't simply due to the cool events, the social outpouring, or the amazing spreading of awareness…
Gun range employee Chris Twardy didn't know how many of his customers cared about him--but he found out and as a result he has a new lease on life. Twardy,…
Thanks to a bad band's 1984 contribution to "culture," everyone’s got a sarcastic “I’m a big deal in Japan” T-shirt. But for once, a blog is writing that phrase without…
When Cheryl Simoens was born, she became one of a small number of babies born each year with cystinosis, a chronic and genetic kidney disease. Cystinosis is characterized by an accumulation…
Ser diagnosticado con una enfermedad neurológica crónica puede ser reivindicación después de años de incontables especialistas visitas, pruebas e investigaciones. Sin embargo, hay todavía un tipo de período de duelo…
In July of 2013, I ended up in the emergency department of the hospital in Minnesota where I worked 20 years prior because my shunt suddenly went into failure while…
Welcome to the Editor's picks for this week! This week got a little crazy, but that's how we like it. What do you think about medical marijuana? Do you watch MasterChef?…
Read Part 1 of this hot debate here! A huge body of research agrees with these findings. However, the exact “medicinal” value we can place on physical activity is not…
How many times can we whisper to ourselves "If only..." before we finally change the past? The answer is infinity. Infinity times. Because you can't change the past. Duh. As of right now,…
An article posted on the Cystic Fibrosis News Today site, piqued my interest about what’s happening in the world of cystic fibrosis, or CF, lung transplantation these days. According to the Cystic…
Obtener un diagnóstico de cualquier tipo es aterrador. Conseguir un diagnóstico de una rara enfermedad autoinmune, que amenaza la vida que usted nunca ha oído hablar de es aterrador. Pero…
If the recent Powerball taught us anything, it's that humans love to get large sums of money. DUH! You've recognized the conversations. Co-workers standing by the water cooler talking about…
For individuals with cystic fibrosis (CF) who know by personal experience the benefits of exercise in treating their condition, Courtney Wheatley, Ph.D. agrees with you and is working to demonstrate…
The end of 2015 brought a lot of changes into my life, some unplanned - and frankly - a little scary. I lost my job, and at the same time…
Are you a caregiver or support person of someone with a rare disease? If so, then you know the profound effect chronic illness like Lyme can have on the patient and…
You want to know what the most popular position in bed is? Scroll down below to check out Lisa's most recent blog post to find out. For all of our…
Síndrome de dolor central es una enfermedad neurológica de toda la vida del sistema nervioso central, lo que provoca constantes, sin fin, señales de dolor agonizante de todos los tipos…
A college class in solo performance, taken during his senior year, changed Brennen Reeve’s life. Why? It was the first time the now 24-year-old ever really shared his experiences with cystic…
Three words: You are cured. That's what people with a chronic disease would give anything to hear. But the word "cure" isn't heard enough. In fact, people hardly hear it at…
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