CGD is No Match For This Mighty Little Hero
To the casual observer, one-year-old Thor Uran is a happy, healthy toddler with a winning smile and a shock of blond hair fitting for his super-heroic namesake. But Thor’s parents…
To the casual observer, one-year-old Thor Uran is a happy, healthy toddler with a winning smile and a shock of blond hair fitting for his super-heroic namesake. But Thor’s parents…
Thanks to narcolepsy, Brianne had an unusual childhood. She began having the symptoms of narcolepsy around the age of seven. As a young girl, Brianne would sleepwalk into the kitchen…
Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…
Our lives were forever changed on March 29th, 2004 – the day my son Tailen was born. There isn’t a day that goes by that I don’t wish that we…
Nolan is a rare dad not only living with, but running with dystonia. Patient Worthy has had the privilege of meeting him, working with him in a recent photo shoot,…
In this election year, a good way to practice being politically active is to write a letter supporting a bill with the catchy name Orphan Product Extensions Now, Accelerating Cures and…
When talking about genetic diseases, rare and otherwise, it helps to know a little bit about genetics. Every person's body has thousands of genes that are responsible for generating proteins…
In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world. Bent at nearly a 90% angle, she frequently…
Socially active, super smart and patient worthy Dr. Kim Becher we applaud you! Patient Worthy found an awesome blog sponsored by the American Academy of Family Physicians (AAFP), Fresh Perspectives:…
I've got to give a HUGE shout out to the folks at Larson Heights Elementary in Moses Lake, Washington! One of their students, Michael Owen, was diagnosed with aplastic anemia…
Here’s a heartbreaking story out of the UK that reminds us never to take anything in life for granted. A young mother with two children, Saffron Taylor, was recently diagnosed with…
If you’re reading this I need to ask you an urgent question. Are you mixed race? Specifically, part Filipino and part European? Yes, I know, it’s none of my damn…
I’ve gotta tell ya that I’m pretty damn impressed with a gal named Joyce. I first heard about her arduous journey with narcolepsy after reading her story on the Narcolepsy Network…
The Dean of Student Affairs at the National Institutes of Health (NIH), Sandra LaBlance, has one thing to say about Rachel Hunt: “She will make a difference in the world.”…
"His health may challenge him, but his mind and determination are as sharp as ever." For decades now, Doug Burr has been actively involved in healthcare policy, with a focus…
Part 2- A Patients’ Perspective on Healthcare in America-The Ridiculous: That Time When a Revolutionary Act got Lost in the Senate. In July of 2015, the House of Representatives passed…
Florida resident, Brian Jackson’s, life changed dramatically when he was 15. That’s when the active high-schooler first started experiencing unusual and terrifying symptoms. First, he stopped being able to write…
Conozca a Brittany Brittany estaba desanimada después de ir a un restaurante y tener que aguantar que la camarera la ignoraba por completo cuando los sintomas de su distonía le hician difícil enunciar. Después de…
Adrenal insufficiency, where the adrenal gland does not produce enough of certain hormones, like cortisol, is the cause of a very rare condition called Addison's disease. And Lita Newdick knows…
I once confessed in an article on this site that I hate dancing because I'm not particularly good at it. Well, now I have another confession: I'm also terrified of…
Fine, I’ll be the first one to say it—I’m a cynic. Straight up. It’s a family trait so proudly established that when questioned by a very young Kiki about our…
"It's crazy that apathy can be allowed to cost so many lives" Dear Readers, How many of you are organ donors? How many of you had to pull out your…
Soccer star legend and two-time Olympic Gold Medalist, Mia Hamm, whose real name is Mariel Margaret Garciaparra, is rocking the aplastic anemia community by sharing her personal story to inspire…
above photo by Sandro Georgi Photography Imagine that your son was suddenly falling asleep all the time; around the house, at school, during dinner, and that when you took him to…
Kathy is the momma of Emma, a nine-year-old girl who grew up relatively normal. She was spunky, energetic, and cheery. But things changed for Kathy and her family when Emma was…