Charlene is a fiercely independent 30-something year-old who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.As a patient living with idiopathic pulmonary fibrosis (IPF), I can’t count the number of times that close friends and family members have asked me to describe what this disease feels like. While I do my best to share my experience with IPF, I’ve been unsatisfied with the explanations I’ve…
Sadly, many patients living with a life-threatening illness are likely familiar with a magnitude of feelings, fears, and emotions. There is no instruction manual on how to navigate life-threatening with a lung disease like idiopathic pulmonary fibrosis (IPF). I’ll never forget when doctors told me that due to my…
An unfortunate reality of living with a chronic illness is that most people will never fully understand your experience. They can’t understand the complexity of living with a chronic lung disease or other debilitating chronic illnesses. Even when someone else has the same diagnosis as you, their experience likely…
Being diagnosed with any type of life-threatening illness will inevitably change a person. This is especially true when there is no link (i.e., genetic predisposition) or reason to think that anything could be wrong, or when the illness is unlikely to target someone due to their age. That was my…
It is hard to admit that my chronic lung disease is having more than a physical impact on me. Idiopathic pulmonary fibrosis (IPF) is a relentless, cruel disease and sometimes it causes me to behave in ways that leave me feeling ashamed. This disease sets me apart from most of…
I vividly remember being told I had something called idiopathic pulmonary fibrosis (IPF). That day and conversation will be forever etched in my mind. I looked at the specialist revealing the news and said to him, “OK. What’s that?” Like most people, I’d never heard of this disease before…
It’s reasonable to assume that dizziness would be a common symptom of having poorly functioning lungs due to chronic underoxygenation. However, now that my lungs are weak thanks to idiopathic pulmonary fibrosis (IPF), the causes of my particular symptoms are more complicated. I have had occasional bouts of dizziness in…
It is inevitable that people living with a chronic illness will experience days that are difficult, both physically and mentally. Since being diagnosed with idiopathic pulmonary fibrosis (IPF) three years ago, I’ve had many of these days. Fear of the future with this disease, physical limitations or restrictions because of failing…
Young adulthood is a life stage typically filled with new experiences, joy, and social celebrations with friends and loved ones. My closest friends and I fall into this category, which encompasses those ranging in age from their late teens through their 20s and early 30s. While young adulthood can…
A disease is considered rare in the United States when it affects fewer than 200,000 people (fewer than about 1 in 1,635 people), according to the Rare Diseases Act of 2002. The European Union considers a disease rare if it affects fewer than 1 in 2,000 people. Other…
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