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…
Patient Worthy wants to give a shout out to Lisa D.! Congratulations on landing the #4 spot in all of AMAZON KINDLE and a 5 star rating. Her book is also…
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…
Monday, November 2, was Color the World Orange Day, an initiative to help bring awareness to Complex Regional Pain Syndrome, also referred to as Reflex Sympathetic Dystrophy Syndrome (RDS). Color the World…
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,…
Being diagnosed with a chronic neurological illness can be vindication after years of countless specialist visits, tests and research. Yet, there is a still a type of bereavement period that…
It's Meme Monday, #NERVEmber, and we couldn't be happier to bring some #MondayMotivation! (Sorry about the egregious hashtags.) In case you weren't aware or you forgot to read our launch…
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…
When you have a rare disorder like CRPS, or Complex Regional Pain Syndrome to the uninitiated, going to the emergency room can rival Alice's adventures in Wonderland. First of all, few members…
Complex Regional Pain Syndrome, or CRPS, is a chronic neurological condition that usually affects a patient's arm or leg, but can present elsewhere on the body. While the medical community cannot…
We are kicking off #NERVEmber! We are very excited to be a part of this campaign to shed some light on chronic illnesses like CRPS/RDS that can greatly effect the…
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