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…
I'm Charlie, a 27 year old working in digital marketing in Auckland, NZ. I'm a big fan of good coffee, good beer, good wine, good food - and lots of it! I…
“It’s funny. The day you feared the most, the day you realized you were not going to climb Mount Everest has come and gone, and you did not collapse in…
Meet Hannah, you may not not realize all that she struggles with from looking at her. She is twelve. This is Hannah's #InvisibleFight With Albrights Hereditary Osteodystrophy and congenital hypothyroidism.…
I am Carla Fairchild. I am forty-seven years old, and family and fashion mean everything to me; they are me. They both are my love, my life, and my passion. Owning a…
My name is Lisa. I am a 3x cancer survivor thriver, and I am living with the rare autoimmune disease Myasthenia Gravis. I am a mother, a wife and an…
My name is Bonnie and I’ve been fighting for my life for eighteen years, but I have been fighting an invisible fight for the past twelve. This is #myinvisiblefight story.…
My name is Shelly. I am a Christian, a wife, a mom, and a writer- a published author in fact, and that is how the world knows me. But the…
I'm Maria; I'm a wife and mother, fashionista and shoe enthusiast. Not all of my days are bad, but no one knows about the really bad days because I hide…
Meet Melissa, a wife, mother and advocate. Patient Worthy interviewed Melissa about her #InvisibleIllness - gastroparesis. Almost two years ago, un-welcomed and without warning, gastroparesis enetered Melissa's life. “I was fine one day…
This is my son Oakley, a five year old with an adorable smile, who loves the Ninja Turtles, and you'd never guess what we've been through. My little man has…
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