The main goal of any well-run camp program is making sure children have the time of their lives, and for one summer camp in Kentucky, their goal is to provide…
The Chinese musician cradled a guitar, the callused fingers of his left hand flying across frets, and the fingers of his right hand plucking and strumming. But on this Tuesday…
I’m a firm believer in the fact that everyone has a story. Sure, the sentiment is a little corny. But that doesn’t make it any less true. That’s why I…
I recently lost a family member to idiopathic pulmonary fibrosis (IPF). She’d lived well with IPF for several years and physically well until the last six months. As you might…
His gums were bleeding. Can you imagine? Think about it—waking up one morning and your gums... are bleeding. I don't know about you, but I'd freak out. This stuff doesn't…
¿Por qué es todavía desconocida una enfermedad descubierta hace 127 años? No sólo eso, sino una enfermedad que afecta a 4 millones de personas en los Estados Unidos hoy! La…
Welcome back to Editor's Choice Patient Worthians! This week, a PW Contributor told a love story about how her husband's bipolar disorder helps her manage her rare disease. We also have an…
Listen up: Scientists in Japan may be onto something big. They’ve discovered there is a significant correlation between the amount of fat vs. muscle that people have and how it…
As a Registered Nurse, I think the main thing that I do is educate people. It can be the actual patient, the caregiver, and/or the family. Nurses spend most of…
We’ve all walked passed a seeing eye dog on duty. The ability of the dogs (and trainers) to learn and react to so much in a safe way is utterly…
El ha sido presentado en el National Geographic Channel. Le ha dado la mano al presidente Obama. Ha sido detenido por el servicio secreto. Incluso después de todo eso, Jason Dunn sigue…
Ohhh, I've got a spark for discussion. I’m verklempt after reading a post from a 30-something woman who is living with idiopathic pulmonary fibrosis (IPF). First, it breaks my heart…
In a previous life, I worked with a number of people living with Parkinson’s disease (PD) to help advocate for them and empower them to fight back to make the…
One of the most frustrating aspects of living with a chronic or rare condition is the financial stress it places on patients and their families. Doctor’s visits and prescription drugs…
A startling new study released December 22, 2016 has made some amazing findings about a new “treatment” that will clearly help people who are living with Parkinson’s disease (PD). You…
A frequent problem with for rare disease patients worldwide is being correctly diagnosed. Prior to the diagnosis you won't know the proper treatments, you don't know why you're experiencing your…
I always love to read a heart-warming story. To me there is nothing greater than when family comes together during a hard time. That is exactly what two brothers did.…
Recent studies show that there may be a new treatment option for people who have specific forms of hereditary early-onset Parkinson’s disease. It’s actually a new twist on an old…
¿Qué pasa si vives con dolor crónico todos los días - y no sólo pequeños dolores, pero dolor de nivel 8 en una escala de 1 a 10? Kirah DeCarlo…
While discussing stem cells can immediately polarize a conversation, the promise they offer could silence the critics. The ability of stem cells to become other types of cells is well…
One of the biggest misconceptions around idiopathic pulmonary fibrosis is that once you get the diagnosis, exercise is off the table and there is nothing that you can do to…
Close your eyes. Now imagine what it would be like to have a hand swell to two, three, or four times as large as it normally is. It could happen…
As the New Year begins, we are all filled with hope of what 2017 will bring. For people with a rare and confusing disease, scientists and researchers are hopeful that…
12-year-old Sarah Stone has had sickle cell anemia for as long as she can remember. She experiences a lot of pain, takes lots of medicines and has had many surgeries.…
Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…
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