One of the most certain parts of our lives is the order of the calendar. “Thirty days has September,/ April, June, and November,/ All the rest have thirty-one,/ Save February at twenty-eight,/ But leap year, coming once in four,/ February then has one day more.” Some might call this a…
Columns
Good morning, readers. If it’s not morning when you’re reading this, let’s pretend for a moment that it is. You just rolled out of bed, made a hot, caffeinated beverage, and now you’re checking on the latest from Pulmonary Fibrosis News. Cozy. Now, raise your hand if you got…
How do you value something that doesn’t have a standard of measure? If you invest in a stock, there is a cost per share. You can see its value at the moment of investment. Over time, you’ll witness both gains and losses to that value. When you sell the stock,…
Achieving and maintaining a healthy weight, either through losing or sometimes gaining pounds, is an important part of our overall health and can often be accomplished through a nutritious diet and regular physical activity. However, weight maintenance becomes more complicated when you factor in a chronic illness. When I was…
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I became a patient at the Inova Fairfax Hospital’s Advanced Lung Disease and Transplant Center in Virginia. Inova is one of 81 locations included in the Pulmonary Fibrosis Foundation’s Care Center Network (CCN). One…
Long before learning I had idiopathic pulmonary fibrosis (IPF), I supported the advocacy efforts of the National Ataxia Foundation (NAF). Like pulmonary fibrosis, some forms of ataxia are rare diseases. One of them, spinocerebellar ataxia type 3, also known as Machado-Joseph disease, took the lives of three…
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…
