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.
This one may not be fresh and recent, but it’s worth another look. It’s kind of an “oldie but goodie,” if you will. And it’s also about damn time someone…
As any parent of a child with cystinosis will tell you, life with the disease can be like a roller coaster. Some days are filled with highs; others with lows.…
I’m sure you’ve heard that old saying; a picture is worth a thousand words? It’s kind of a cliché. It’s also kind of wrong. Some pictures are worth far, far,…
We’ve told you before how pharmaceutical companies can be a good source for free disease education online. Because of the way pharma companies have to vet all their materials to…
Living in the 21st century’s wireless information economy can be both a blessing and a curse—there’s so much information out there, you can learn pretty much anything about everything. But it’s…
Another science fiction trope may be moving closer to science reality. Smartphone and tablet-maker Samsung and medical device company Medtronic have joined forces to create something startling: Neural implants that…
A couple of months ago we took a look at the legacy of David Vetter, the “Boy in the Plastic Bubble” whose lifelong battle with Severe Combined Immunodeficiency (SCID) caught…
For many cystic fibrosis (CF) patients who grew up in years past, one of the greatest hurdles and frustrations was being told they couldn’t do something, especially sports or physical activities. Sometimes…
So here’s a nice antidote to all those stories about greedy pharma execs soaking patients for ultra-expensive treatments. There’s a new approach to contrpay-acting between insurance companies and pharmaceutical companies…
PatientWorthy is teaming up with CysticLife.org to spotlight some of the members in their awesome community! CysticLife.org sprang from a blog started by CF patient, Ronnie Sharpe, to track his life…
We’ve known for a while that the key to ensuring a richer quality of life for people with cystic fibrosis is early detection and treatment. Of course, that’s much easier…
Though she’s lived with cystic fibrosis since she was 17 months old, Olivia never thought of it as something that made her different. Growing up, her daily medication routine was…
One of the (many) things that makes cystic fibrosis so difficult to treat is that there are many mutations of the disease, some affecting very, very tiny subsets of the…
If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be right up there among the…
Hey, how’d you like to be able to wear shorts anytime you want, even in the dead of winter? Sounds good, right? How about being able to eat as much…
If you’re a regular PatientWorthy reader, chances are you’ve been on the receiving end of this loaded statement from at least one doctor: “We’re going to need to run some…
Ok, it’s time for an experiment. Grab a random group of people off the street and stick them in a room (make sure to ask first, please). Ask them to…
Admit it. You never outgrew Halloween. Oh sure, you may not be able to score those sweet fun-size candy bars from the neighbors anymore (at least not without getting a…
Bronchiectasis is a condition which damages the airways leading in and out of the lungs, stripping them of their mucus-clearing capabilities. Common variable immune deficiency (or CVID) is an immune…
If you’re one of the small number of people living with acromegaly symptoms today (an estimated 60 out of every million people worldwide), we’ve got some good news for you.…
For those of us who grew up in the 1970s and 1980s, the phrase “Bubble Boy” zaps us right back to a sharp mental image that will always stick with…
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