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.…
You may already be familiar with the story of Todd Cendrosky, Todd Bachman, and Brittany Peck. As of this writing, the Facebook photos of the three have been liked by…
High cholesterol, particularly low-density lipoprotein cholesterol (LDL-C) is a problem for many people, but none more so than those who have the genetically inherited condition familial hypercholesterolemia (HeFH) and homozygous familial…
You'd think in today's world of technology, we'd be ahead of the curve, especially where it pertains to diagnostic/prognostic testing. The thing about discovery is that it takes time, even the…
I'm sick as hell and I don't wanna take it anymore! Won't somebody please diagnose me?! Over at RareConnect, a man named Blair writes about his symptoms: hearing loss, hives, joint…
Twenty-somethings, how would you feel if you were quickly watching your body age? And what if you looked like an 80-year-old by your thirtieth birthday? Or how about this: What…
Athletes always seem to be on a level beyond reach of those around them, much like a revered saint or goddess. Their physical prowess is awe-inspiring, the pinnacle of human strength and…
So, let’s say you’ve lived most of your life with a bucket of symptoms you’ve never understood, and that doctors have never been able to diagnose. Symptoms like joint pain,…
What do you do when you can't get the care you need? If it's an insurance issue holding you up, then you'll probably end up spending countless hours on the…
Who knew that good ol' colonialism could be a leading cause of rare diseases?! At least, that's the case for many Quebecers. Tyrosinemia, which affects about 1 in 100,000 babies…
For anyone suffering from chronic pain, you know what it’s like. If you haven’t had that luxury, here’s what it feels like: You feel like Frankenstein. Your friends and family…
When you’ve got a rare disease, people are bound to give you The Look. You know the one. It says: “Oh, bless your heart; you’ve lost so much.” And you…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
