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…
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…
When it comes to the different types of dysautonomia, there are often prescriptions doctors try (like Midodrine) to relieve some of the symptoms. But for me, the side effects outweighed the…
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…
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