Columns

January 23, 2020January 21, 2020

This Is Who I Am Beyond Pulmonary Fibrosis

Columns, Younger than 30: Living with IPF, a column by Charlene Marshall

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 ... Read more

January 20, 2020January 17, 2020

It Takes a Village to Survive Pulmonary Fibrosis

Columns, Younger than 30: Living with IPF, a column by Charlene Marshall

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 ... Read more

January 17, 2020January 22, 2020

Caregivers Need Care, Too

Columns, Courage to Care - a column by Christie Patient

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 ... Read more

January 16, 2020January 14, 2020

My Latest Health Setback Left Me Feeling Overwhelmed with Guilt

Columns, Younger than 30: Living with IPF, a column by Charlene Marshall

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 ... Read more

January 13, 2020January 14, 2020

Being Vulnerable with a Chronic Illness Can Be Beneficial

Columns, Younger than 30: Living with IPF, a column by Charlene Marshall

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 ... Read more

January 10, 2020January 8, 2020

An Expert’s Guide to Visiting Someone in the Hospital

Columns, Courage to Care - a column by Christie Patient

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 ... Read more

January 9, 2020January 7, 2020

This Holiday Season Brought Bittersweet Memories

Columns, Gonna Live My Life by Mark Koziol

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. ... Read more

January 9, 2020January 7, 2020

What It’s Like to Have An Illness That No One Knows About

Columns, Younger than 30: Living with IPF, a column by Charlene Marshall

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 ... Read more

January 6, 2020January 2, 2020

Living in Deep Fear of the Dreaded IPF Cough

Columns, Younger than 30: Living with IPF, a column by Charlene Marshall

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 ... Read more

January 3, 2020December 20, 2019

Making Adaptations to Your Home for the Transplant Recipient in Your Life

Columns, Courage to Care - a column by Christie Patient

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 ... Read more

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