When the human brain experiences a sudden disruption of blood flow, a type of paralysis called "hemiplegia" can result. Paralysis can occur on either the right or left side of…
If you are suffering from or caring for someone with Hemophilia B, then this event is for you. The 11th Annual Hemophilia B Symposium When: Fri, Mar 31, 20177:00am and Sun, Apr…
Most people who have heard of idiopathic pulmonary fibrosis (IPF), we probably imagine a grandparent with their oxygen tank on a little cart and nasal tubes hooked over his/her ears.…
In college, everyone loved the "Fall back" night of Daylight Savings Time. We got an extra hour of sleep and it was much needed considering we were likely celebrating Halloween the night…
It’s very possible that you have found yourself in a situation where you would have liked to improve somebody's mood, but you may not have known how to do it.…
No hace mucho tiempo, empecé a seguir una prensa sobre una adorable joven llamada, Maddie, de Lawndale, Carolina del Norte, que vive con la enfermedad de Behçet, y estoy encantada…
Have you ever heard the expression— “In for a dime, in for a dollar”? It basically means if a person commits to something, then he/she commits all the way. And…
When we do good, it feels good. Just like the efforts of the Kohn family and their event to raise awareness for Inflammatory Bowel Disease (IBD) and to appeal for…
Those of us with rare diseases like behcet's and fibromyalgia, that cause great pain, can often get frustrated and irritable because we try everything, do everything right, and yet we are still…
In these times of political uncertainty, when budgets are being slashed, and medical programs are being defunded without regard to the people who will ultimately suffer, I certainly hope that…
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…
Kathryn es una esposa y madre de dos niños increíbles. Ella vive con síndrome de fiebre periódica idiopática indiferenciada, urticaria inducida por el frío y síndrome de taquicardia postural (POTS).…
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…
Researchers at a Japanese university are working to improve a drug that could treat a rare neurodegenerative disease called Niemann-Pick type C (NPC). The researchers observed a drug that has…
It sounds like a cliché to say that “becoming a parent changes everything.” Probably because it is a cliché. But as a parent, I know it also happens to be…
¿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…
It's not selfish to take care of yourself. It's good for you and it's good for your loved ones. It's hard to be there for other people when you haven't…
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…
Every week, my son’s principal sends a voicemail to parents highlighting the week’s news and activities. At the end of the message, she signs off with a reminder to “Be…
From the perspective of a mother with a child who has a serious and rare medical condition, Pfeiffer syndrome. There are many reasons why the term “special needs” can have…
Imagine walking through the woods at night. You have no lantern and no flashlight—not even a match. The darkness is suffocating, and you’re terrified. But you keep blindly stumbling. It’s…
Now that the brutal and bruising 2016 Presidential Election is behind us and we’ve waded into the Trump era, maybe we can finally move past some of the most divisive…
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