A health crisis—just like epidermolysis bullosa (EB)—is different for everyone. But, most have one thing in common: Bad news blindsides us. We take a hit—a hard one at that. When…
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.…
For most of us, a nice stroll in the woods is a leisurely activity for relaxing or light cardio. But for disease ecologist Richard Ostfeld, a walk in the New York…
Primary immunodeficiency diseases (PI) weaken the body's immune system, leaving patients prone to infections. In very mild cases, the person may not even know they have PI, but in other…
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…
Growing pains usually occur in younger children and are equally common in girls and boys. They are characterized by aches and pains and often occur in the lower limbs, usually…
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…
This article was originally written a year ago. We are republishing it today in Prince's memory. I’m sure you’ve seen countless tributes to Prince in honor of his legacy.…
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…
There is a well-known football player who is in one of the biggest fights of his life, and his courage and fierce determination to help raise awareness about sickle cell…
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.…
Diamond Blackfan anemia (DBA) sounds like the villainous star of an action movie, but it's not. It's an extremely rare blood disorder wherein the bone marrow doesn't make enough red…
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