California is home to a large number of amusement parks that are beloved by thousands of children and their families. Of course we love theme parks; it’s American as apple…
Eight years ago, Gina Rosendall-Saucedo received a diagnosis for her persistent movement disorder that she never expected. After an 18-month search for answers, she finally had one, but it was…
Here at PatientWorthy, we think laughter can be the best medicine. Ironic humor is sorta our thing. But to those easily offended, or perhaps even moderately intolerant, we suggest you…
Ellicott City, Maryland | President Marcia Boyle has spent decades advocating for people with immune deficiencies. Her own son was diagnosed more than 30 years ago when he was an…
Imagine having a disorder that controls your movements. A disorder that causes painful muscle contractions that can’t be stopped. Imagine being in a wheelchair because of this....and wanting to dance.…
Aaron is a twenty-four year old college graduate living in Alabama. He’s an entrepreneur who majored in small business management. His father is a pastor and he has three siblings.…
Going off to college is a big change for anyone. You’re likely living in a new city, dwelling in a new room, and surrounded by hundreds, if not thousands, of…
When you’re young, healthy, and thriving, it’s hard to imagine that it’s possible to be taken down by a chronic disease, such as ankylosing spondylitis (AS). Like many young people,…
In this account, from Philly.com, Dr. Thomas Klein, allergist and immunologist, describes his problem. A mystery had come across his path that he didn't think he could solve. He was seeing…
Do you ever have any burning questions about a rare disease that you’re just dying to know the answer? Us, too. Lots of ‘em. That's why we're presenting our list…
We've seen great memes from the community, an awesome mom who is trying to raise awareness for CVID through a viral video, and so much more. Check out the highlights…
5-year-old Hadley Alexander isn’t normal. Every morning, her day officially begins at 7 a.m. She’s coaxed awake by her parents and, through a tube in her stomach called a g-tube,…
Not long ago, I read an article about a heroic father’s quest to fight injustice for his son who is living with a rare genetic autoimmune disease called familial cold…
Basically everybody has been affected by the high costs of healthcare at some point in their lifetime, and for many, not much changed when Obamacare (Affordable Care Act) came to…
Asking for help isn’t always easy for people living with a chronic illness. We don’t want to be defined by our disease, but, at the same time, our diseases can…
Candace gathered her cards, launched "Oceans" in the background, and pressed play as she began to record a video explanation of her rare, frequently misunderstood disease, Common Variable Immune Deficiency…
If you have a friend or family member who recently was diagnosed with Behcet’s Disease, it’s time to educate yourself about the disease—because the more you know—you’ll be better prepared to…
There’s a famous line from Harry Potter and the Deathly Hallows, when (*SPOILER ALERT*) Harry talks with Ghost Dumbledore for the last time. Trapped in a disturbing posthumous landscape, about to…
We all know what it’s like to have a bad day, a bad week, or even a bad year. But the thing is, with time, things usually work out; life…
For those who have Sjögren's syndrome, you don’t need the lowdown. But for those unfamiliar, it’s commonly associated with two main symptoms—dry eyes and a dry mouth. Why? Because certain…
Everyone loves a little mystery, except when it comes to ominous types of autoimmune diseases. In an article from Rare Connect, a website that connects rare disease patients globally, a…
What is Sarcoidosis? Ever heard of it? It’s an inflammatory disease that’s characterized by granulomas, or in layman’s terms, a collection of immune cells that deposit in organs of the…
One of the frustrating parts about having Behcet's disease is that it can affect so many different parts of your body. And unlike other conditions that may only need a…
Normally on #mememondays, we provide uplifting, funny, and sometimes just straight to the point memes that you can share all across the social universe for #mondaymotivation. This week we are…
Don't you just hate click bait? I do! While searching for real information about Behcet's Disease--because, WE NEED IT!--I came across this; an article about Behcet's treatment by Business Standard.…
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