After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.
“Courage” is an adjective people throw around with relative ease to describe people and decisions that are not really courageous: A politician who vouches for a bill that may cost…
If you’re one of the people in the United States diagnosed with Behcet’s Disease, the odds are extremely high you’re the only person living with that disease in your city,…
Sometimes, you just gotta be an unstoppable force... What do you do when you’ve been diagnosed with a disease like Behcet’s, something so rare that information and resources about it…
With a disease as rare as cystinosis—as in, only 2,000 people around the world are believed to have it rare—one of the biggest hurdles to raising funds for research has…
Becoming a parent can be exciting and terrifying in nearly equal measures—along with the thrill, anticipation, and joy, there’s the fear of what could go wrong. Worrying about your child’s…
When most of us think of breathalyzer tests, we picture flashing lights, police officers, and stern discussions of how fast we were driving (…or is that just me?). But of…
Hey, do you love bike riding? Competitively or otherwise? And are you going to be in the Philly area around May 7th? Then you should consider taking part in the…
One of the toughest parts of living with Sjögren’s syndrome is you can’t always toddle down the road to your local Sjögren’s patient get-together. There are no flashing neon signs…
Most researchers like to say that their work is “groundbreaking” or “revolutionary.” And most reporters—whether print or digital—like to use those words too, because they help get people’s attention. But…
When you’re living with a rare condition like Sjögren’s syndrome, sharing your diagnosis with a famous name can be both a blessing and a curse. Obviously, it’s helpful to be…
Looking for a good, concise description of common variable immune deficiency (CVID)? You could do a lot worse than to watch this video from the Children’s Hospital of Pittsburgh of…
Are you one of the estimated four million people in the U.S. living with Sjögren’s syndrome? Are you going to be in the Seattle area between April 8th and 9th?…
Here at Patient Worthy we’ve written before about the heavy toll Severe Combined Immunodeficiency (SCID) can have on families and about the lessons learned from the most well-known SCID case,…
World PI Week is coming up later this month, from April 22-29. So what better way to celebrate than to learn what exactly PI is! Not to be confused with Pi…
Life with narcolepsy can be fraught with daily challenges. Excessive daytime sleepiness, cataplexy, or other narcolepsy symptoms can interfere with daily life and activities and make concentration difficult. And for…
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…
Anyone who’s lived with narcolepsy knows how tough it can be to find other people who can relate to what they’re going through. The folks at the Narcolepsy Network know…
You’ve probably heard the saying, “the journey of a thousand miles begins with a single step.” That’s very true, but it’s also true that getting to that first step can…
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…
When British father Matthew Parkes took his wife Pamela and daughter Sophia on an anniversary holiday to Majorca, Spain last year, he got much more than he'd ever bargained for.…
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…
Let’s say for a moment that you’re a new parent. First things first: Congratulations, we’re so happy for you! Now, let’s also say that hidden among all the tests and…
So let me get this out of the way upfront: I’m no scientist—and no, I don’t play one on television. I struggled with science in school, which is why I’m…
On their face, exercise and illness would appear to be diametrically opposed states of mind. But there’s plenty of anecdotal and scientific evidence to suggest that overall physical fitness can…
Okay, so speaking as a dude, I have a confession to make: Dick jokes make me laugh. They make me laugh hard. (Sorry…) And most guys, whether they admit to…
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