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…
Central Pain Syndrome is a lifelong neurological disease of the Central Nervous System, which causes constant, unending, agonizing pain signals of all somatic types simultaneously. It is caused by lesions on the…
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…
Ankylosing spondylitis (AS) patients listen up because we’re talking to y’all! According to an article published to Medical Xpress, AS patients have lower serotonin levels compared to those without AS.…
As reported by the Pain News Network, when someone suffers from chronic pain, chances are he or she might have more than one ongoing disease or condition. This is called…
If you've ever been a caregiver for someone living with a chronic or life-threatening condition, then no doubt you've had to wonder what's waiting around the next corner. That question of "What…
In 2013 Nisa woke on the floor needing stitches in her head. She had no memory of falling. Looking back that was the beginning of her journey with POTS, which…
No one wants to have familial hypercholesterolemia—heterozygous (HeFH) OR homozygous (HoFH). Why? It's obvious. Having too much “bad cholesterol” in your system creates all sorts of serious health issues. But…
For anyone living with a progressive chronic illness, life ain’t no “box of chocolates.” No matter how positive or optimistic people are, living with pain and fatigue--day in and day…
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…
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