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.An emerging healthcare priority in the past decade has been patient-centered care. It is an idea that many facilities are still trying to define. Patient-centered care is simple to me: person first, patient second. I’m grateful to my healthcare team for getting this right. Before my diagnosis with…
You may be familiar with the proverb, “It takes a village to raise a child.” The phrase is believed to have originated from the Nigerian Igbo culture and is often cited in literature and popular media, most famously in Hillary Rodham Clinton’s 1996 book, “It Takes a Village.”…
You would be hard-pressed to find anyone who hates pulmonary fibrosis (PF) more than the patients living with it and their caregivers. This chronic and debilitating disease, characterized by progressive scarring in the lungs, is cruel and relentless. PF affects much more than the ability to breathe — it also…
One of my most vivid memories of my late friend Serena Lawrence is when we sat down to discuss my becoming a columnist for Bionews Services. I’d just been diagnosed with idiopathic pulmonary fibrosis (IPF), a lung disease characterized by fibrosis in the lungs that prevents oxygenation. Serena wrote…
Idiopathic pulmonary fibrosis (IPF) is a little-known, complex, and misunderstood rare disease. I hadn’t heard of it before my diagnosis at the tender age of 28, just over three years ago. Learning to live with a fatal lung disease as a young adult is one of the hardest things I’ve…
In December, I wrote a column about slowly emerging from a month of being sick with pneumonia and the flu. I shared the importance of doing our best as patients living with idiopathic pulmonary fibrosis (IPF) to stay away from those who are sick, and why common illnesses…
These past six weeks have been difficult as I continue to recover from a horrible ordeal with both pneumonia and influenza. While I’ll never know how I came into contact with these viruses, I’ve become paranoid about touching surfaces such as grocery cart handles and doorknobs because of my…
I’ve held three full-time jobs in my career, each averaging about 40 hours per week. I’ve never tracked the number of hours I spend managing my chronic illness, but it wouldn’t surprise me if they equate to a full-time workweek. Since being diagnosed with idiopathic pulmonary fibrosis (IPF) three years ago,…
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) three years ago, I had never heard of the disease. I was told that it was rare. Even rarer, my doctors said, was my diagnosis at 28. They had considered IPF when first looking for answers for my breathlessness,…
The world is a different place than it was a decade ago, especially in the realm of technology and social media. Smart devices track daily tasks, remind users to complete to-do lists, help with budgeting, and navigate driving routes. There are a number of ways technology can help patients…
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