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…
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…
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?…
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…
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…
Living with dystonia is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was king of Ephyra who was punished for chronic deceitfulness and condemned…
If you are a parent of a chronically ill child, there are a million things running through your head every single day—day in—and day out. Enter the parents of a…
El angioedema hereditario puede ser una enfermedad rara que califica para el estatus de medicamento "huérfano", pero estamos lejos de estar solo. Hay organizaciones de AEH y las instalaciones de…
You can read all the books, write all the articles, and study all the patients, but one thing will always separate someone without a rare disease from someone with a…
Depending on the intricacies of our personal health challenges, some of us may be motivated to take actions that others would find unreasonable. For example, I once met a man…
When Ashley Owen was a year and a half old, her family received news that would forever change their lives. As described through her silent but powerful Youtube video, Ashley…
In the "Don't judge; you never know what someone's going through" department.... Oh. My. GAWD! This woman is awesome! Growing up, this young woman blogger, whom we'll call Ezzie, was…
Q: What do Fergie, Josh Dumal and Scott Niedermayer have in common? A: They are celebrity spokespeople for CureDuchenne a nonprofit organization that raises awareness and funds research to find a…
In an ordinary world, one girl faces an unexpected fight. Fated to take on the mantle passed down by her mother, she must defend her life against this incredible foe. Will she deny…
Living in the 21st century’s wireless information economy can be both a blessing and a curse—there’s so much information out there, you can learn pretty much anything about everything. But it’s…
When you hear the word "narcolepsy," you may think of Rowan Atkinson's character in the movie Rat Race. He has narcolepsy, a disease characterized by frequent bouts of day-time sleepiness. Throughout the…
The Estevan Kinette's Club requests the pleasure of your company at their inaugural Princess Ball at the Beefeater Plaza in Estevan on January 16th. Please come expecting to dance,…
Happy Friday Patient Worthians! We are rounding out our Cystic Fibrosis campaign with CysticLife this week. For the past few weeks, Patient Worthy has been supporting CysticLife's collaboration with the Mayo Clinic for a…
This year’s holiday season was difficult. Allow me to explain by saying that it was great to be with my family after at least 20 years of not being in…
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