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…
At the 2017 MGFA conference a panel consisting of Denise Trombly, Kim Eldridge, Mike Ursic, and Nancy Law presented “Becoming a “Take Charge” Patient: A Proactive Approach to Managing Your…
Ever wonder what it’s like to be so sick and disabled that you can’t live a normal life but you aren’t sick or disabled enough to actually be considered disabled?…
Read a really wonderful, inspiring heartwarming story about two old friends which you can read here that I’d like to share to give you and your loved ones in the…
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,…
Let’s talk kid-friendly. A slew of things may come to mind. With the warmer weather approaching, some may search for family-friendly activities. It’s an even better bonus when we find…
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…
What do zebras have to do with primary immunodeficiency (PI)? Nothing and everything, it seems. Apparently, there’s a saying in medical school that goes: “When you hear hoof beats, think…
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…
When: May 20th Where: University of Chicago Medicine Center for Care & Discovery CCD Board Room 5700 S. Maryland Ave Chicago, IL 60637 Presenters: Olatoyosi Odenike, MD Andrew Artz, MD,…
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,…
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