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…
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…
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…
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…
No matter what happened in your past or what may happen in you're future, it's no match for you. You are tough enough to handle it. Your inner strength is…
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…
Broadway Belts for Pulmonary Fibrosis is a yearly musical and comedy fundraiser to fight pulmonary fibrosis (PF). Created 7 years ago to honor the memory of Associated Press theater critic…
Gorlin-Chaudhry-Moss, or GCM, is an inherited disorder that falls under the umbrella of craniofacial syndromes. While the fetus is in utero, premature closure between bones in the skull occurs, and that…
I read the most AMAZING post—and I mean AMAZING post (I am not kidding! OMG!) written by a woman who has been living with Cushing’s disease for less than 5…
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…
On January 8, 2017, a man with one of the most brilliant minds of our age celebrated his 75th birthday. This, by itself, wouldn't be particularly remarkable, however the celebrant…
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