Columns

The word “identity,” which refers to a person’s “distinguishing character or personality,” according to Merriam-Webster, may sound simple to understand, but it’s actually often confused with other terms. Before you read any further, take a moment to think about your own identity. When you have a description in mind, please…

It’s normal for people to come and go in our life. Our circle of friends changes when we change schools, start a new job, get married or divorced, and have children. Being diagnosed with idiopathic pulmonary fibrosis (IPF) had the same effect on my group of friends. As my IPF…

Have you ever gotten into the car, started driving, and then snapped out of a trance at your destination with no memory of the trip? Let’s call it driving on autopilot.  Relying on your reflexes to operate a vehicle is certainly one way to get from point A…

No one will ever convince me that COVID-19 is just a cold. Unfortunately, I’ve heard this sentiment echoed by healthy friends since the start of the pandemic as a means of downplaying public health measures meant to curb the spread of the virus. But having had COVID-19 twice now, I’ll…

What a rough three weeks my family has been having. I’ve had to put a hold on writing my column because of events outside of my control. Once again, I am angry with this rare illness of mine. It not only puts a hold on my life, but…

Dictionaries play many roles in our lives. In early childhood, we use a dictionary to associate pictures with words. In early education, we learn to use a dictionary to define unfamiliar words and look for alternative meanings. In the computer age, we create spreadsheets with data dictionaries. Dictionaries fill in…

Given the various unfortunate events happening around the world, including the evolving war between Russia and Ukraine, I’ve been reflecting on the many ways my family and I are blessed. At times, I’ve been guilty of not realizing my privilege. I’ve always had the basic necessities, including a roof…

Internet scams are widespread and can infiltrate every aspect of our digital presence. The prevalence of online dating scams, for instance, was recently highlighted in the trending Netflix documentary “The Tinder Swindler.” Scams have become particularly rampant in rare disease communities, and are spreading rapidly via social media platforms,…

For most of my adult life I was blissfully unaware of rare diseases. This lasted until 2016, when I was diagnosed with idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive lung disease that affects about 200,000 Americans, with 50,000 new cases diagnosed annually in the U.S. Like many others,…

The availability and quality of healthcare patients receive is often based on where they live and what they can afford. This is especially true for those among us with a rare disease. That’s what health equity is all about. It belongs under the umbrella term “social justice,” which encompasses a…