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…
During an appointment at my clinic shortly after my idiopathic pulmonary fibrosis (IPF) diagnosis a few years ago, I had a conversation with my pulmonologist about clinical trials. That discussion led to my personal commitment to support research as much as possible. The conversation ended with a simple…
I’ve found myself daydreaming lately about a return to normal. I long for the days when we didn’t need face masks, when I could see someone’s smile during a conversation, and when hand sanitizer wasn’t the most frequent smell I encountered. Most people who know me would describe me as…
“Every day is a new adventure!” This is often my response when someone asks how I’m doing. It also seems appropriate when looking forward to what 2022 may hold for me. I faithfully use my calendar to keep track of many tasks, both professional and personal. Before I was…
I thought I understood the role of a caregiver. It was based on what I learned and observed watching others. It turns out I did not fully appreciate the role until I had a caregiver. The role of the caregiver is not a single responsibility, but a collection of…
Along this journey with idiopathic pulmonary fibrosis, my care team has had several different tools at their disposal. Some must be used in combination with others, while some are only used to gather information. Pulmonary rehabilitation, which can be deployed both pre- and post-transplant, falls under both…
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