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,…
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…
After watching a rather “dry” physician, a pulmonologist (I presume) on a video (you can watch it here), I felt like there was more to be had. This goes beyond…
When the pain and muscles contractions from my dystonia were at their worst for me (see above), it significantly limited what I could do. For years I characterized dystonia 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…
CFRI's third annual Embrace Retreat is happening May 5th - May 7th! The Embrace Retreat is specifically geared toward mothers of children and adults battling cystic fibrosis. Just in time…
Here at Patient Worthy, we aim to bring you rare patient news. It might not always be the news you want to hear, but it’s important nonetheless. Today’s dose of…
When you think of a physical therapist, you typically think of a person that will help with treating injuries. Or you think of them a movement specialists. Surprisingly, physical therapists…
Have you ever heard a word and not known what it was? That happens to me all the time. I hear something, I think it sounds like something else, and…
Liver disease has many causes and last month, March was Liver Disease Awareness month in Canada. Yes, Canada. That country with the handsomest Prime Minister... ever. (*Sigh*) But I digress. In…
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