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,…
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…
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…
We may be heading into the holiday season, but there is no Ho! Ho! Ho! in HoFH. Most people can't even say it, let alone try to live with it:…
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…
Let’s face it. Every now and then, you run across an article that makes ya wanna go, “Whaaaa?” And this is the perfect example. Apparently, a bunch of research analysts…
‘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…
Ok, it’s time for an experiment. Grab a random group of people off the street and stick them in a room (make sure to ask first, please). Ask them to…
Serendipity (n): the occurrence and development of events by chance in a happy or beneficial way. As many of you probably know, the journey to a cystinosis diagnosis is no walk…
An incurable disease that causes painful muscle spasms just got $45,000 closer to a cure. Dystonia is an uncomfortable condition that causes muscles to contract involuntarily, forcing the body to…
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