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.…
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…
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…
Growing up, the young boy would always hear jets roaring over his neighborhood. This sparked his dream, his passion. Anthony Lickteig-Carter always hoped to become a pilot. Nevertheless, because of his condition,…
I remember reading the words of Evan Davis: “It’s not a bad idea to occasionally spend a little time thinking about things you take for granted. Plain everyday things.” Some…
Have you ever heard that a single postage stamp on the blade of a helicopter can cause it to crash? We might react with disbelief or disillusionment before we consider…
The brave aren't fearless. They just do the right thing despite their fear. The same goes for resilience. You might think the truly mentally tough never want to quit, but…
Remember the last time you had a bad day? You know what I’m talking about—those times when we come home and plop down on the sofa—and devour a huge piece…
Happy Friday Patient Worthians! What do you know about sickle cell anemia? We have seven facts for you! Also, we have some hope-worthy nonalcoholic steatohepatitis (NASH) news to report. What does…
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