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.
Let’s do a quick poll. How many times have you been talking to the curious or well-meaning about how you live with a rare disease and gotten this question: “What does…
While it wouldn’t be fair to describe hemophilia B as the red-headed stepchild of the bleeding disorder community, it is far rarer than the more common hemophilia A, and bleeds…
Have you been following the news out of Europe recently? Between “Brexit” and the ongoing clashes over immigration, it would appear the continent’s fragile unity is coming apart before our…
Ok, this is different. Usually when we’re reporting on a new drug study or talking about medication, we’re all about better living through chemicals. So, it’s a little weird to…
You really have to feel for the poor flu vaccine. Not only is it a target of the inexplicable “anti-vax” movement that would have us believe all vaccines are the…
As if you needed further proof that the human spirit can accomplish incredible things, here’s a great story from “across the pond.” In 2012, 15-year-old British student Jessica Gillatt was…
Here at Patient Worthy, we know how hard it can be trying to find information online about rare diseases. Blogs about personal experiences can highlight the worst aspects of a…
So this is kind of a bummer: Clinical trials looking into using Alexion Pharmaceutical’s drug Soliris for treatment-resistant generalized myasthenia gravis have just come up short of expectations. Soliris, which…
One of the hardest parts of living with a rare disease like myasthenia gravis is just finding someone else who lives with the disease. MG patients are few and far…
Quick question: What does multiple myeloma have to do with myasthenia gravis (MG)? On the surface, not much—one is a rare cancer of the blood, the other is an autoimmune…
Are you a guy with ankylosing spondylitis (AS)? Then you need to know about this study. It suggests that men with AS are at a higher risk of dying from…
For Deborah Cooper, getting diagnosed with myasthenia gravis was the easy part. Everything that spun out of that diagnosis was what really turned her life upside down. It started innocently…
Researchers around the world are constantly looking for new leads in combating chronic illnesses, and they’re making progress all the time. But it’s not often they make a discovery like…
As anyone with Myasthenia Gravis will tell you, this disease is no picnic. In most cases it’s treatable with immunosuppressive therapies and people can live full—and fulfilling—lives with MG. But…
When most people think of bleeding disorders, they tend to think of Hemophilia. And if they know a little more than the average guy or gal—and let’s face it, if…
Here’s some interesting news for anyone living with ankylosing spondylitis (AS): A growing prevalence in AS around the globe has translated into increased spending on—and development of—more reliable treatments. Persistence…
Here at Patient Worthy, we spill a lot of (virtual) ink talking about all aspects of living with a rare disease. Our goal is to be supportive and understanding, a…
In the world of diagnostics and treatment, change is usually a slow, gradual process. But so far, this is turning out to be a damn good year for anyone interested…
Most parents spend at least part of their parenting life wondering, “What will I do today that permanently screws up my kid in the future?!” Which to be honest, is…
In the ongoing fight against cancer and all its various forms and permutations, all doctors can agree that a timely diagnosis is critical to successfully slowing or halting the spread…
As the father of a newly-minted teenager, I’ve come to understand all too well the fleeting nature of childhood “firsts”: First words, first steps, first artwork, and other moments in…
For old-timers like me who grew up in the Dark Ages before the internet, it’s still amazing to think that you can access what amounts to the contents of the…
The right doctor and the right hospital can make all the difference when your child is diagnosed with a rare (and frankly terrifying) medical condition. That’s what London couple Sukhi…
When most people think of Lyme disease, the first thing that comes to mind is usually a big, fat tick (immediately followed by manic itching). What’s harder to wrap your…
In March, Delaware became the latest state to propose bills aimed at either combating Lyme disease or requiring expanded insurance coverage for the disease. Leaders in the state—which has one of…
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