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…
On Jan. 31, 2017, Dr. Steven Nathan, a pulmonary disease expert, sat on a stool in a clinic room across from my wife, Susan, and me, and confirmed my diagnosis of idiopathic pulmonary fibrosis (IPF). The gravity of my diagnosis hit Susan especially hard, to the point where every…
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…
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…
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,…
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…
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,…
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…
How does a person with a chronic, progressive lung disease of unknown origin live their best life? How do they continue to live their best life in a pandemic? In the days immediately following my diagnosis in January 2017, I made a couple key decisions about my relationship with…
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