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…
Remember when PW reported on the Newborn Screening and Gene therapy for the Immune Deficiency SCID? Well guess what our friends at the Immune Deficiency Foundation are doing? The IDF…
Siblings! We all have our opinions. Not everyone has that close unified bond with his or her brothers and/or sisters, but one thing is certain: If the connection is there,…
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…
What would you do if you had a disease so rare that you went weeks or months without a diagnosis? What would you do if after your diagnosis, you told…
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…
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”…
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…
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