The clock is ticking to sign up for this big conference! Thousands are expected to flood the convention halls at the North American Cystic Fibrosis Conference (NACFC) this November. Indianapolis,…
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…
Want to join in on a Waldenstrom’s Macroglobulinemia discussion, but there isn’t one near you? Well, this might be a great opportunity to take part in one from the comfort…
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…
Prepping for bedtime in my house is like going into battle. The children are provided the first warning around 7:30 p.m. From that moment forward, everything revolves around the mission-critical…
You know the Internet meme: There’s a woman, head in hand, silently weeping, or James Van Der Beek, from his Dawson’s Creek days, on the edge of crying big elephant…
There is so much about how our bodies work that we take for granted. The careful concert of organs, systems, and structures that allow us to breathe, walk, talk, and…
Parents strive to make a child’s life better—even before the baby bundle comes into this world. The sacrifices parents make for their children are innumerable, and one dad from Mississippi…
The 1960s were a time of social rebellion and reform. The Civil Rights Movement, the feminist movement, and Vatican II all rose from a growing sense of dissatisfaction with the…
Only 1 in every 250 people have familial hypercholesterolemia (FH) worldwide and it is widely underdiagnosed with more than 90% of people not knowing they have it. In fact, according…
You know the best thing about a 3-day weekend? A 4-day work-week! We hope you had a fun and safe Labor Day Weekend here in the states. How do you…
A record amount of dollars is heading to help those fighting Waldenstrom’s macroglobulinemia (WM). According to its website, for the first time, the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) approved $2.2…
"The Troubles" in Ireland/Northern Ireland go back to the 1700s, and they were aptly named. There's been a lot of fighting on both sides—those sides being the Irish and the English.…
Chances are you grew up with the fragrant scent of baby powder perfuming the air. Your mom may have used it to prevent your diaper rash or to sooth herself…
Duchenne muscular dystrophy is most common in males, and is characterized by muscle weakness that progresses over time. Onset is as early as three years of age and the life…
I sat behind Bobby in Basic Algebra class, room 17. We were both 15 years old. Each day of class, we’d manage a polite “Hey.” Then one day he wasn’t…
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