“Well, listen to your lungs.” Those were the first words from my doctor’s mouth, following his slight look of concern. It was early 2020, just before the COVID-19 pandemic began in the United States, and I had boldly (and perhaps foolishly) told him that I was running a half-marathon in…
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In May, I read about a poll of 2,000 Americans who reported using excuses an average of six times per day. At the time, I thought it was crazy that each person racked up 2,190 justifications per year not to do things. On a weekly basis, there was…
“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” While the origins of this quote are uncertain, it is often attributed to writer and activist Maya Angelou. But even if Angelou didn’t actually say this, she…
Cyclosporine, also called cyclosporine A, is a medication that suppresses the immune system. It is commonly used to prevent rejection in patients who underwent liver, kidney, or heart transplants, and to treat the symptoms of rheumatoid arthritis. Cyclosporine is also used treat symptoms of psoriasis and inflammatory eye conditions,…
For the past few months, I’ve been having a lot of pain around my ribs. I may have dislocated a rib, causing everything in the area to tense up in response (I’ve done that before), or it could be costochondritis (inflammation in the connective tissue around the ribs), which is…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience. Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…
With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been diagnosed. That’s the warning from Christopher P. Austin, MD, director of the National Center for Advancing Translational Studies(NCATS) at the…
I never liked group projects in school. Whenever one was announced, I’d groan and silently hope for the best. But the scenario always played out the same: slackers dumping the work on everyone else. I wanted to believe the pandemic would change behaviors. With the stakes so high, maybe everyone…
Twice in the past month, a charley horse in my right calf has ripped me from blissful sleep. Even though prednisone wasn’t to blame for the agonizing 4 a.m. wake-up calls, it’s the first thing I thought about while lying in bed, writhing in pain. I’ve lost count of…