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On Tuesday, Sept. 15, 2020, I received an email asking if I would participate in an exercise on how deceased donor organs are allocated. The opening statement read: “The Organ Procurement and Transplantation Network [OPTN] is developing a more equitable system of allocating deceased donor organs. The new approach, continuous…

My health journey began with a rare illness called lymphocytic interstitial pneumonia (LIP). Coping with the diagnosis was hard, but I knew I could do it. What I didn’t expect was that I’d have to handle several other conditions on top of it. I’ve also been diagnosed…

Writing can be therapeutic. As a therapist, I often encourage my clients to write as a way to process trauma, release emotion from their body, or organize their thoughts ahead of a difficult conversation. Whether they’re writing a letter, column, or journal entry that they plan to share or…

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) on Jan. 31, 2017, I quickly understood three things about this disease. First, it’s chronic. Second, it’s progressive, though it progresses at different rates in everyone. Finally, there is no cure. One therapy available for IPF is…

One of the most certain parts of our lives is the order of the calendar. “Thirty days has September,/ April, June, and November,/ All the rest have thirty-one,/ Save February at twenty-eight,/ But leap year, coming once in four,/ February then has one day more.” Some might call this a…

Good morning, readers. If it’s not morning when you’re reading this, let’s pretend for a moment that it is. You just rolled out of bed, made a hot, caffeinated beverage, and now you’re checking on the latest from Pulmonary Fibrosis News. Cozy. Now, raise your hand if you got…

How do you value something that doesn’t have a standard of measure? If you invest in a stock, there is a cost per share. You can see its value at the moment of investment. Over time, you’ll witness both gains and losses to that value. When you sell the stock,…

Achieving and maintaining a healthy weight, either through losing or sometimes gaining pounds, is an important part of our overall health and can often be accomplished through a nutritious diet and regular physical activity. However, weight maintenance becomes more complicated when you factor in a chronic illness. When I was…

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I became a patient at the Inova Fairfax Hospital’s Advanced Lung Disease and Transplant Center in Virginia. Inova is one of 81 locations included in the Pulmonary Fibrosis Foundation’s Care Center Network (CCN). One…

Long before learning I had idiopathic pulmonary fibrosis (IPF), I supported the advocacy efforts of the National Ataxia Foundation (NAF). Like pulmonary fibrosis, some forms of ataxia are rare diseases. One of them, spinocerebellar ataxia type 3, also known as Machado-Joseph disease, took the lives of three…