Columns

I’m in the business of validating people’s feelings. As a therapist, I’m called upon to listen actively to clients and validate how difficult a particular situation has been for them, even as they work through it. I enjoy this part of my work because everyone is affected in unique ways…

Life with a rare disease is often a journey of discovery. With each test comes the possibility that my healthcare team will identify a new issue I’m facing. I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017 and had a bilateral lung transplant four years later. Because of…

Traveling is complicated with a chronic illness. When you require supplemental oxygen to breathe or struggle with hypoxia on airplanes, things become even more challenging. This has been my experience with idiopathic pulmonary fibrosis (IPF). IPF is a life-threatening and progressive lung disease that often leads to…

What happened? Where did 2023 go? How can it be Jan. 2, 2024? Time seemed to drag when COVID-19 began to ravage the U.S. Many people with rare diseases, including the pulmonary fibrosis (PF) community, were heavily affected by the isolation. And not just patients, but caregivers, too.

For those who may be reading my column for the first time, it may be helpful to understand where I’m at in my medical journey and how it began. In late 2016, a chest X-ray indicated that something was wrong with my lungs. I was referred to a pulmonologist,…

‘Tis the season of giving, a time when the spirit of benevolence fills the air. During the holidays, we’re encouraged to give wholeheartedly and with grace, which creates an atmosphere of joy and peace. However, the season’s festivities prompt some reflection on the nature of giving. Why limit this…

I’ve been involved in equity issues for most of my adult life and have been an advocate for the rare disease community for decades. In the biblical story of David and Goliath in 1 Samuel 17, David had no intention of shying away from Goliath. Neither do I.

Each month, Brad Dell, the director of community content at Bionews, the parent company of this website, curates a list of special days of recognition ranging from the whimsical to causes that have special meaning to both individuals and entire communities. From the whimsical side of the December list,…

When people first think about disease or disability, they usually go to the physical symptoms — understandably, since they’re the most visible. But a chronic illness can affect all aspects of life. The emotional, social, mental, and financial implications can be grueling for patients, too. As a patient diagnosed…

Have you seen the Apple TV+ series “Ted Lasso“? In it, Lasso is a fictional U.S. football coach who was recruited to manage a soccer club in the U.K. He was recruited because he knew nothing of European football. The club’s owner, Rebecca Welton, wanted the team to…