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,…
Hospitals are germ-ridden, bacteria-infested places. Hospital-acquired infections—especially staph infections—are known to be a leading cause of death among hospitalized patients. For those of us with immune systems compromised by chronic illnesses…
Understanding of cystic fibrosis (CF) has, thankfully, come a long way from its earliest descriptions of children being “bewitched” or “hexed” because their sweat tasted of salt. And the life-expectancy of kids…
When Hagan's mom tells the 12-month-old Irish boy that he's one in a million, she isn't kidding--and it's not exactly a compliment, either. Those odds refer to the fact that…
"I wish people would just take five minutes to look up Ehlers-Danlos syndrome to raise awareness." These are the words of 15-year-old Mya Lilly Hurst, an Australian girl who suffers from…
If you or your loved one is living with a rare chronic disease, you’ve probably gone through the various stages of grief: denial, anger, depression, bargaining, and hopefully acceptance. Depending…
If you or your loved one is living with homozygous familial hypercholesterolemia (HoFH), you’re going to be thrilled with this news--and you deserve it, too! The Patient Advocate Foundation (PAF) just announced on November 2nd,…
Hanna Gully was a girl with a dream: one day she was going to travel the world, and dare to do all of the things she had set her mind…
We recently posted an article discussing the positive connections between dystonia and depression (and Harry Potter, oddly enough). That was just one instance where researchers were finding interesting new treatment…
w an withIt’s kind of a badge of honor when a rare disease gets airtime on an internationally-loved television show. And maybe the doctors at Canada’s McGill University Health Centre…
At 23, Jessie Brenholt should be busy planning the rest of her life, such as marriage and having a family. Instead, the 2012 graduate of Le Cordon Bleu College of Culinary…
Did you know it’s NERVEmber? It all began in 2007. The Power of Pain Foundation created NERVEmber. November has become the month for the awareness of Complex Regional Pain Syndrome, or…
Hereditary angioedema may be a rare disease that qualifies for “orphan” drug status, but we are far from alone. There are HAE organizations and treatment facilities all over the world…
‘Tis the season! Picture it. Salem, Massachusetts. It’s 1692 and suddenly, things have gone horribly, horribly wrong for you. In the middle of the night, a small band of angry…
You won’t come across too many people in your lifetimes like Elaine Gomez and her daughter, Michelle DeMont. And you probably won’t come across anyone who has died, or nearly…
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