As Rare Disease Day approaches on Feb. 28, I’m trying to narrow the focus of my advocacy efforts. I never imagined I’d become an advocate and grow to love so many people living with rare diseases. But that all changed in April 2016, when I was diagnosed with idiopathic…
In the 1939 Frank Capra film “Mr. Smith Goes to Washington,” a naive young man played by Jimmy Stewart is appointed to fill a vacant seat in the U.S. Senate. He was determined to make a difference and perhaps change the world. Faced with the challenges of the political arena,…
As a young adult, I feel competent in many aspects of my life. In my career, I’m a new clinical manager in the field of psychotherapy, and I feel grateful that things are going well. Personally, I can carry out the tasks of living independently fairly well. I care for my…
Having a rare disease results in many complex problems, some of which can be debilitating. This has been my experience over the past six months as I’ve struggled with pulmonary fibrosis (PF) and heart issues due to atrial fibrillation with rapid ventricular response. While managing my health…
“It was July 9, 2021, at 9 a.m. NBC’s ‘Today’ show was on television in our house that morning. I was in my home office going through my morning routine while my wife, Susan, was downstairs in her home office. “When my cellphone rang, I recognized the number as the…
Whenever my family visits my husband and me here in Hawaii, I can’t help but reflect on my first trip to the islands right before my mom, Holly, was hospitalized for an acute exacerbation of her idiopathic pulmonary fibrosis (IPF). That 2018 visit was our first real family vacation…
Living with a chronic illness takes commitment, patience, and endurance. A lot of energy is required to manage your disease, medication schedules, procedures, and medical equipment. For me, equipment management means keeping my oxygen tanks in working order, as I’ve relied on them to breathe since I was diagnosed…
On Jan. 18, Larry Runyon passed away at 76. Larry was a warrior fighting idiopathic pulmonary fibrosis (IPF) for more than 15 years. He’s certainly not the first person I’ve known who has passed because of IPF, but he is the first one to pass whom I’ve known for…
There are certain moments in our lives when a single event becomes indelibly etched into our memory. And the significance of such moments is dictated by each of us. Think about that for a minute. What moments are etched into your memory? Have you dealt with the loss of a…
Minutes after I’m wheeled into the operating room, everyone stops — a timeout. Lying on my back with an awesome view of the ceiling, the calm and quiet of the room are very noticeable. I’d been connected to various leads, used to monitor everything from my heart rhythm to my…
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