Happy Friday Patient Worthians! Did you know it was World PI Week this week? We have a post on the role pets have with PI. We also have a story on a…
If you or your loved one is living with idiopathic pulmonary fibrosis (IPF), scientists have proven that there is a link between exercise and longevity—especially for people who have IPF.…
I was at a gala hosted by my local library about two weeks ago. It was a posh affair, as library galas go, and everyone was all dressed up. The…
When you’re a parent, the childhood milestones are many. Flash, blink, bam—and then the rite of passage to adulthood starts. Yeah, I know… I flew through those first 18 years…
Anger. Who doesn’t get angry? From big to small stressors in life, there are far far far too many triggers to choose from that can set us off. But, what…
The transition from childhood to adulthood—the “coming of age” of boys who become young men and girls who become young women—is a significant stepping stone in everyone’s life. However, the…
I’m barking mad! You know the old saying, “Let sleeping dogs lie,” right? Well, I couldn’t help but think of the 200,000 Americans living and struggling with narcolepsy because they’re…
Have you ever been lonely in a crowd? Have you ever been perfectly content all alone? Me too. And although it’s a little crazy to admit, I’ve also suffered from…
Not many people can say they’ve dedicated their life to curing the disease that could lead to their death, but David Fajgenbaum certainly can. In a fascinating Science Magazine article, David…
When I was in college, I went to the home of my biology lab partner to work on a project. While we were sitting at the kitchen table, I got…
While the national conversation on healthcare has recently and rightly focused on the political debate over the Affordable Care Act’s future, it’s worth remembering what’s happening on the “street level”…
Marijuana use is certainly controversial and a debated topic. But what's less debatable is the progress of the movement to legalize and embrace it American society - especially for medicinal use.…
Imagine watching movies with friends, not knowing that you have narcolepsy and struggling to stay awake. Your eyes keep rolling and you keep fighting to stay awake. Yet you cannot.…
BIG props goes out to a 43-year-old woman who’s living with sickle cell anemia! Having been accused of “jonesing” for more pain medication in the hospital, she quickly became sick…
This article was originally published on Luke's blog and is shared here with permission. Keeping our kids safe is every parent’s number one job. Even as an adult I associate…
San Diego is rumored to have one of the nicest climates in the United States. From what I've heard, it's a balmy 72 degrees almost year-round, and the sky is…
What does it mean if you have the sickle cell trait? Or what if you have sickle cell disease? Does it mean you can’t exercise? Does it mean you will…
My girlfriend called me the other day—crying hysterically. I couldn’t understand her much, but it didn’t matter. I know she’s raising her first-born child with familial dysautonomia (FD). Problems related to…
It’s a plot device. It’s a joke to be exploited by comedians. It shows up as the punchline in movie after movie. As soon as it comes out that a…
Really? Really. As if having one serious chronic disease isn’t enough, what makes God say, “Hmm…Let’s give this poor, innocent child, another chronic illness"?! In this case, I'm talking about…
Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and…
Feeling distraught because your child may have nonalcoholic fatty liver disease (NAFLD)? Well you should be—but keep in mind there is still time for hope. I read an easily digestible…
Duchenne muscular dystrophy (DMD) affects approximately 15,000 to 20,000 young boys in the US, but for the Richard and Jamie Romito family, those numbers mean nothing. All three of their sons…
As a young girl, Joanna found a cat scared and stranded in a tree. Muffin became her first cat, and so began Joanna’s lifelong love of rescuing animals. But Joanna has…
The following blog post was written on October 4th, 2016 by a #raredad whose daughter is battling a chronic illness. With his permission, we are republishing this powerful memory here.…
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