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…
Columns
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…
Last month, I suffered a significant injury to my left knee. I had just parked outside a medical building for an appointment. The sun was setting on a relatively mild Canadian winter day, and I slipped on a patch of black ice, dislocating my patella and falling hard onto the…
During the course of having idiopathic pulmonary fibrosis (IPF) or any other rare disease, the role of the caregiver requires a large measure of patience, an ability to multitask, and the capability to pivot without knowing what lies ahead. Caregivers, whether working alone or as part of a team,…
Teaching has been a passion of mine since I earned my masters degree in sociology from the University of Houston-Clear Lake (UHCL) in 2013. Becoming a college professor gave me a sense of self-worth. I was proud of my accomplishments, especially since I obtained my degree so late in…
Is 90% of a message’s effectiveness dependent upon the way it is delivered? In terms of our rare disease, how important are the words we use to describe it? Many of us with a rare disease only learned about it when we were diagnosed, so we shouldn’t be surprised…
