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.”…
I was recently brainstorming ideas with other rare disease columnists about how to support someone admitted for a long hospital stay. I started thinking about the ways that caregivers need support, too. It’s easier to be the person who can walk out of the hospital, but caregivers still deal…
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…
I’ve never been hospitalized for more than a day, but I have spent a fair amount of time visiting others. Even though it’s sometimes hard to show up, I always make an effort. The last thing I want is for my people to feel abandoned when they are coping with…
I enjoy the holiday season, especially Christmas celebrations. As my siblings and other family members were born in Poland — I am the only one born in the U.S. — we follow a traditional Polish Christmas, holding most of the festivities on Christmas Eve, or Wigilia. Special foods are…
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…
While preparing for my family to visit at Christmastime, I was reminded of when my mom, Holly, was discharged from the hospital after her double-lung transplant. We had to make adaptations to make our rented apartment a safe environment for her. Â She had been in…
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…
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