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…
Common variable immune deficiency is just one of a cluster of disorders under the primary immunodeficiency diseases (PID) umbrella. People with this rare condition are often repeatedly misdiagnosed because there is a…
Peter and his wife Ashleigh call their son Riley their “little fighter.”This is his nickname because he made it to his first birthday, which was well beyond what doctors told…
I donate blood whenever I can. Is it a fun-time activity? Nope. Let's face it: Nobody likes to get stuck with a needle. So why do I bother? I donate because other…
Teresa is a 16-year-old girl who is changing the face of sickle cell anemia (SCA) disease. And… SHE… ROCKS! Instead of sitting back and feeling sorry for herself, this beautiful…
Runner’s high: the euphoric sensation that endurance athletes feel when they exercise for an extended period of time. For those who have never felt it, it sounds like the Fountain…
Sudden. Intense. Pain. It feels like a burning sensation. Your toes, or your fingers, or your knees feel engulfed in flames. There is pressure, and there is pain. Where did…
Did you know that the #1 genetic cause of death for infants is spinal muscular atrophy (SMA)? It quickly robs the infant of physical strength, rendering the child unable to…
There's some promising news about a hormone therapy for nonalcoholic steatohepatitis (NASH). Read on, but first, let's put things into context with some practical, real-life background stuff... How was your…
The way the Japanese government handled Hansen's disease patients during the 20th century wasn't very humane. They were sent to live in sanatoriums, separated from their families, and shunned by…
I love to read a good story about someone overcoming the odds. A young man living with Stargardt disease has done just that this month! He is the first Indian to…
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