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…
For parents of children with dystonia, that frustration is a horrible, ongoing reality. Parents like Melissa Phelps from Gallaten, Kentucky knows this all too well—her young daughters Madison and Olivia…
Right now, you and I are smack dab in the middle of one of history’s greatest information ages. We have more ways to learn about the world around us than…
Okay, Dr. House: We've got first-time parents who claim their newborn is "cranky, fussy, projectile vomiting, and refusing to eat." Although they also say the child has a distended stomach,…
13 years ago, after being diagnosed with a chronic illness, Lisa Copen couldn’t sleep. She was trying to figure out how to manage her new normal. She just wanted to…
I'm Caroline McCarry. I'm a daughter and a friend; a sister and a cousin; a baker and a writer; a cheerleader and a person who has suffered from OCD and…
Meet Samanta. She’s been fighting an incredible amount of symptoms since early 2012. She’s currently diagnosed with Celiac Disease, Ulcerative Colitis, Gastritis, Autonomic Neuropathy, Peripheral Neuropathy and Postural Orthostatic Tachycardia…
© Copyright 2024 Patient Worthy
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.
