Fun fact about Bradley Mann: he used to feed boiled eggs to the pet raccoon at his nursery school. Trust me, this is only the start to an interesting life…
Author Douglas Adams once said, “I love deadlines. I like the whooshing sound they make as they fly by.” Deadlines are a strange thing. Sometimes, a doctor will give you…
Approximately one million people worldwide have been diagnosed with tuberous sclerosis complex (TSC), a condition where non-cancerous tumors and other lesions grow most commonly in the kidneys, heart, lungs, skin and…
If you or your loved one has cataplexy, I definitely suggest you read this post, written by a young woman who’s living with it. I say “living with it” vs.…
Jamie has been living with Tourette syndrome, so bad that she was not able to perform many of her daily activities. She would often avoid going to places outside of her…
Everyone has problems. That’s part of life. In fact, we have that old phrase, “That’s life.” Usually, people whip out said phrase whenever something doesn’t go the way they want…
The tick bit Margie when she was 10, marking the start of a battle with Lyme disease, a battle that continues to this day, into Margie’s 50s. Hers is a story…
While most people with hemophilia are men, everyone should be more aware of what it is. Women have the potential to be carriers if the disease runs in the family.…
How long can you live without your heart? How long without your liver? Your spleen? Your lungs? A woman in Canada learned the answer to that last one. Melissa needed…
The image of a scientist conducting research on himself is a plot element in most superhero stories, as well as the classic Robert Louis Stevenson novella Strange Case of Dr.…
The artist's medium? Wood, mirrors, and various other materials. His art? Jarring and beautiful headpieces—Tiago Valente's way of understanding his own experience with dystonia. Tiago called it facial dystonia, and from…
He wrestles, plays football and enjoys the day-to-day activities many 14-year-old boys would. Unlike many 14-year-olds, Drake was diagnosed with SoJIA, or systemic-onset juvenile idiopathic arthritis. “I have yet to…
What would you do if you felt an overpowering urge to nod off? For most people, I think we would just go to sleep. It’s relatively easy to find a…
When your child is diagnosed with Tay-Sachs, what should you do? How should you cope? A baby with Tay-Sachs disease appears healthy at birth and seems to be developing normally…
Fear of the unknown is a feeling we’ve all faced at some point. I liken it to standing at the edge of a cliff with nothing but a fathomless crevasse…
Devic's disease, also known as neuromyelitis optica (NMO), affects the spinal cord and the optic nerves. It is a relapsing-remitting disease, meaning its symptoms can appear and disappear. In NMO,…
A rare, neurological disorder affected three women with the same career in Spokane, Washington over the last two years. All three were healthcare workers, so it would be easy to…
Imagine what it would be like to feel weak every time a strong emotion took hold. Of course, we all know that feeling when our knees feel weak or our…
Iva Rauh is a Pemphigus Vulgaris patient and advocate living in Maryland. Originally from Eastern Europe where the gene for this disease is prevalent, this is her plea to the…
If dance is the universal language, then what does NC State’s annual Dance Marathon have to say--especially to type 1 tyrosinemia (TYR)? A lot, it turns out. The numbers seem…
Chucky Bartolo of Lovin' Malta introduced Jake Vella to the world yesterday. Jake suffers from the rare disease ROHHAD. While he was a regular kid for the first five years of his…
Irrelevant, insignificant, ignored, un-empowered, but worst of all INVISIBLE. Let me let you in on a big secret. Those of us who are fighting everyday with the simplest of tasks,…
Alicia Goss is a college student, and for a long time she didn't know she had a rare condition called Wilson disease. She just wanted to go out and have…
When Megan Howard looked down at her completed drawing, colorful lines intersecting to form odd shapes, she saw elements of “The Scream.” She thought it a fitting depiction of her…
One tie, two ties, red tie, blue tie... The list goes on and on for Doug Robins, a young Australian man who’s raising awareness for Duchenne muscular dystrophy (DMD) by…
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