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?…
Do you have VASCULITIS? Associated with: Behcet’s Disease, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis (Temporal Arteritis), Granulomatosis with Polyangiitis (formerly Wegener’s Granulomatosis), Hpersensitivity Vasculitis (Leukocytoclastic), IgA Vasculitis (Henoch-Schönlein Purpura), Kawasaki…
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…
April 22nd through April 29th is World PI Week, dedicated to bringing awareness to Primary Immunodeficiencies (PI). If you want to participate, World PI Week has some great information for…
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…
When Louis Mendiola was a young man, he served our country as a soldier in Vietnam. Years later, Mendiola, now 62 years old, had another fight on his hands: He…
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…
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
