It’s fair to say that many (if not most) Americans are inseparable from their smart phones, and that a device that was pure sci-fi 25 or 30 years ago is…
Most people are familiar with the old adage, “The squeaky wheel gets the grease.” My grandmother used to go a bit further by pointing out, “But the greased wheel that…
Just days before Christmas 2016, the FDA gave a present to some of the children in the United States—they approved the first treatment ever to treat spinal muscular atrophy (SMA).…
According to an article in The Campbell River Star, NHL stars, Rod Brind’Amour and Ryan Nugent-Hopkins of the Edmonton Oilers traded their hockey sticks for golf clubs (sort of)—all to…
Happy Friday Patient Worthians! It's the week of the 2017 Global Genes Advocacy Summit, and we have the details for you. First, we have a PW contributor's take on conferences,…
Day two of Global Gene's 2017 Patient Advocacy Summit started out with a fire side chat with Christopher Austin, MD, the Director of the NIH's National Center for Advancing Translational…
I thank my mother for exposing my sister and I to the chicken pox at the same time as kids because I don't even remember having it. And while shows…
At the 2017 Global Genes Advocacy Summit, one of the break-out sessions discusses the drug development process. But it goes beyond this to educate us, the patients, on how imperative…
We have written about the anatomy of an HAE attack before. It’s a living nightmare. HAE is a rare genetic disorder. It is characterized by recurring, unexplained, severe swelling underneath…
Patient Worthy is fortunate enough to be at the 2017 Global Genes Rare Patient Advocacy Summit this week. While the personal stories that have been shared are highlights of the…
Parkinson’s disease is a degenerative movement disorder of the central nervous system that insidiously forms, even starting subtly with a single tremor, progressing into slurred speech, loss of balance, and…
Earlier this year, Kyle Petty made his way across the country for his annual fundraiser appropriately called "Ride Across America." While Petty, a famous NASCAR racer, says one of his…
No one likes being sick, yet Mom always finds a way to turn this rough situation into a special feeling. Mothers have a way of taking care of you physically…
Recently on Recombine, a website dedicated to providing up-to-date blog posts about planning a healthy family, a story popped up from a young woman sharing her experiences about being a…
Everyone seems to have Epstein-Barr in my family. My mom, who has celiac disease and sciatica, and my sister, who has lichen sclerosis. Given that typical MDs don't seem to have…
In 1973, the lifespan of a person with sickle cell disease (SCD) in the U.S. was only 14 years. Thanks to the dauntless efforts of researchers, scientists, and clinicians, today…
It can be pretty difficult to live in a world where very few people understand your rare disease life. Thankfully, there is a way to find others through the internet,…
It's been a tough year for the United States Congress and healthcare legislation - you might have heard, they failed to repeal and replace the Affordable Care Act nor have…
I hate to be a killjoy, I really do. And I hate being an alarmist even more. Trust me, I know there’s nothing more annoying than that one guy who…
I don’t think it comes as a shock to anyone to say the costs of drugs are too damn high. The rarer the disease, and the smaller the patient population,…
What do you do when your four-year-old daughter first notices a man with a prosthetic leg? A coworker picked up the story in a grocery store when his little girl…
Since this is my first contribution to Patient Worthy, I thought I would spend some time writing about the process it took to receive my diagnosis of idiopathic pulmonary fibrosis…
Norway scientists Suchi Mittal, et al. have found compounds that reduce levels of a key gene that increases the risk of developing Parkinson's disease. Parkinson's disease is a degenerative central…
Raise your hand if you like Adele, the English singer-songwriter! Well, hopefully, your hand is raised, but if not, that’s okay too. I’d still like you to consider Adele’s actions…
I second-guess every decision I make. Should I wear my hair pulled back, or will it just flop in my face all day long? Should I wear heels and risk…
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