“It’s all in your head.” I dare say these are words that many people living with a rare disease, including dystonia, have heard. It’s absolutely unfair, aggravating, heartbreaking, maddening. I…
You will not often find me in the kitchen--a place that often plays a center role in the lives of families with cystic fibrosis. I have nothing against cooking—other than…
"Be strong," they say. "Don't give up." However well-meaning the sentiment, those phrases sometimes ring empty. What does it even mean to be strong? To persevere? I think Jackie Barber's story…
Okay... I'll be the first to admit my diet needs improving. I'm more likely to reach for a bag of chips than a bag of carrots and, if I'm hungry,…
As I was reading a post about Ehlers-Danlos syndrome on Stanford Medicine's Scope blog, a particular line caught my eye. The author of the post writes about "the moment [EDS patients] open our eyes…
Before I tell a story (that I first read in The Globe and Mail newspaper) about Joaquin Farias and his years-long quest to unlock the mysteries of dystonia, I must…
An immensely frustrating aspect of living with a health condition, and particularly a rare one such as idiopathic pulmonary fibrosis (IPF), is that other people might know nothing about the very disease…
Idiopathic Pulmonary Fibrosis (IPF) most commonly affects aging adults, but for columnist Charlene Marshall, the disease struck in her late 20s. A diagnosis in and of itself is shocking, but…
I'll admit, I don't have sickle cell anemia, but I do have a bad habit: I don't ask for help. No matter the situation—maybe my car has been towed, or…
The National Institute of Neurological Disorders and Stroke states Guillain-Barre syndrome (GBS) affects 1 in 100,000 people. Let that sink in. 1 in 100,000 equates to 0.001%. Compare that to the…
To put it lightly, the phrase “fight like a girl” isn’t exactly music to my ears. But when women take ownership of the saying, re-claim it in a way, that’s…
Not many people can say they’ve dedicated their life to curing the disease that could lead to their death, but David Fajgenbaum certainly can. In a fascinating Science Magazine article, David…
As a young girl, Joanna found a cat scared and stranded in a tree. Muffin became her first cat, and so began Joanna’s lifelong love of rescuing animals. But Joanna has…
What do zebras have to do with primary immunodeficiency (PI)? Nothing and everything, it seems. Apparently, there’s a saying in medical school that goes: “When you hear hoof beats, think…
Greece, Italy, Egypt, Costa Rica, Dominican Republic, Mexico, Wales, Scotland, Ireland – these are all countries the Beaulieu family has explored. And the family has explored them all in the…
Here at Patient Worthy, we aim to bring you rare patient news. It might not always be the news you want to hear, but it’s important nonetheless. Today’s dose of…
At first the running was exercise, a way to lose a few pounds. Running soon became the way Beth Markesino forgot her diagnosis of trigeminal neuralgia (TN) – the way…
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…
In reading about various diseases, I sometimes find that the content reads like alphabet soup. Sometimes, it’s helpful to simplify and clarify. To get down to the basics. April is…
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…
Royalty, murder, lots and lots of blood – sounds like elements from the plot of a Victorian-era thriller. Actually, this story comes straight from hemophilia history. Science Magazine published a…
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…
Some memories come to mind so vividly you remember every sensation: the smells, the sights, the sounds, the feelings. For me, many of my most vivid childhood memories involve the…
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…
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