Lo admito; De las docenas de veces que he visto a la película "The Princess Bride", nunca me detuve a pensar en el actor Andre Roussimoff. Él es el tipo…
Not long ago, I started following some press about an adorable tween named, Maddie, from Lawndale, NC, who is living with Behçet’s disease, and I’m just smitten! At the ripe…
With rare diseases, there’s often a lot of information that’s unknown or mysterious to the general public, patients, and even doctors. Ehlers-Danlos Syndrome (EDS) is a group of disorders that…
"I’m tired of dying and I fear I’ll be dying for the rest of my life.” This is a powerful truth for anyone dealing day-to-day with a chronic condition, but…
Cuando eres es un padre preocupado con un hijo enfermo y los médicos no pueden decirle lo que está mal, o darle respuestas que no conducen a soluciones, ¿qué se…
After being diagnosed with a rare disease, there’s often a myriad of questions that follow: What am I going to do? What is this disease? Is it curable? And the…
For 90-95% of people living with sarcoidosis, the disease affects their lungs. As granulomas grow throughout the organs, they may experience coughing, chest pain, shortness of breath, and sometimes even…
It's unfair, but Hollywood thinks narcolepsy is funny. Over and over, characters suffering from the rare neurological disorder are portrayed as buffoons, falling asleep face down in their chicken soup,…
If you live in Connecticut, and happen to have a rare disease, efforts are being made to help make your voice heard. When you're one in a very few, it…
Dysautonomia (dis-aw-tuh-noh-mee-uh or dis-auto-noh-meeuh) is surprisingly common. Around the world, an estimated 70 million people are impacted by autonomic nervous system disorders. And while some forms are fairly rare, there are…
You know what they say about a guy with big feet... ...he's also got a BIG dictionary, ya know, since he's probably had to research acromegaly. Okay, maybe they don't say…
When lives hang in the balance, should the needs of a few trump the bottom line? That question was all too real for one Australian mother, Shanna Druisi. As reported in…
It's no secret that people are more dependent on technology than ever. We've got computers in our cars, TVs on our phones, and WiFi on our airplanes. It shouldn't be…
Double D's. And not the good kind. Disease and Depression. All too often, after being diagnosed with a chronic illness, patients just give up. They withdraw. They stop trying. They…
Meet Emily Deaton, 21, of Mechanicsville, Virginia. Like many people with invisible illnesses, Emily's journey to an accurate diagnosis was more of a nightmare than a dream. Emily has a disease of…
When I joined millions of other obsessed fans who watched what’s become the wildly popular “Bubble Boy” episode on Seinfeld back in 1992, I had no idea there was a shred…
How much do you think the average five-year-old girl weighs? According to kidshealth.org, the answer is about 45 pounds. Now, how much do you think a wheelchair for that same…
Here's the scenario: a woman and a man walk into the emergency room with the same symptoms. Both have terrible pain in their abdominal region. The man is immediately brought…
Just because Halloween has passed doesn't mean we're done talking about brain surgery. Specifically, deep brain stimulation therapy. No, this isn't something like Frankenstein's monster. Deep brain stimulation therapy is…
Jake Conaway learned how dangerous hereditary angioedema (HAE) can be when he was just seven years old. That’s when his father died because of the rare genetic condition, which occurs in about…
When you're diagnosed with ankylosing spondyliltis (AS), the last thing you want to do is work out. Unless, of course, you're Nate Lewnes. College senior, Nate, may no longer be…
Who knew that dystonia and tennis go hand-in-hand?! For twenty-year-old Josh, it's a match made in heaven. He's been fascinated with tennis his whole life and refused to let dystonia…
What did Greek shipping magnate Aristotle Onassis, Academy Award-winning actor Sir Lawrence Olivier, and a four-year-old girl named Hattie, have in common? They all had or have a neurological disease that affected their muscles called…
Back in 2009, a nasty strain of the flu, namely swine flu, raced around the globe knocking people down like bowling pins. The first reports of this new flu came out…
Getting a diagnosis of any kind is scary. Getting a diagnosis of a rare, life-threatening autoimmune disease that you have never heard of is terrifying. But if you’re reading this,…
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