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…
The way I see it, the film-making Nolan brothers must have been trying to one-up each other. I like to imagine them sitting on Christopher’s back deck. Obviously, it has…
There is an old proverb that all sailors know: You can’t control the wind, but you can adjust the sails. Living with persistent, incurable diseases and/or chronic pain is a…
Stephen Mitchell was losing his fight with IPF about five years ago. He began running because he did not want to die of a lung disease, like his father. Although…
The word adrenoleukodystrophy doesn't exactly roll off the tongue, does it? Adrenoleukodystrophy (ALD) is an exceptionally rare genetic disease that affects one in 18,000 males. If you're one of those 18,000 people,…
May 15th is TSC Global Awareness Day! Tuberous Sclerosis Complex (TSC) is defined as an inherited disorder that causes tumors to develop in vital organs. One million people worldwide are…
A few days ago on April 10, 2017, a terrible tragedy took place in San Bernadino, California. An angry gunman entered a special education classroom in North Park Elementary School and…
G-M-O. Three letters guaranteed to spark lively, if not heated, debate amongst lifelong friends. These three letters, of course, stand for "genetically modified organisms." Why are they so controversial? Why…
Greece, Italy, Egypt, Costa Rica, Dominican Republic, Mexico, Wales, Scotland, Ireland – these are all countries the Beaulieu family has explored. And the family has explored them all in the…
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