Personal Stories About Lung Conditions

Stories that Inform, Comfort, and Empower
People with healthy lungs don’t notice the 20,000 breaths taken each day. But people who live with chronic lung diseases such as asthma, pulmonary fibrosis, and cystic fibrosis are keenly aware that the disease can literally take your breath away. A few patients, caregivers, and healthcare providers generously share their stories in their own words in the hope that others will benefit from their experience and knowledge.

Trisha Torrey, a nationally-known patient advocate, sat down with Morgan McCall, an inspirational 11-year-old girl who was born with cystic fibrosis. The whole family is involved with Morgan’s care, and they have a unique story to tell.

Read Trisha’s Moving Encounter with the McCall Family

“Don’t be so protective. Sometimes kids want to do something, and sometimes you should let them do it.”

Morgan McCall, age 11, giving advice to parents with children born with cystic fibrosis.

Read Morgan’s story in her own words

“We kept a chart on when we gave her what because it was so hard to remember.”

Paula and Steve McCall, parents of a child with cystic fibrosis, about the determination it took to organize care for their daughter.

Read Paula and Steve’s story in their own words

“We like to do fundraisers and go to the walks and create teams to raise money.”

Brandt McCall, brother of Morgan McCall, who was born with cystic fibrosis, about the empowerment he gets from working with the Cystic Fibrosis Foundation.

Read Brandt’s story in his own words

“He grew weaker with each treatment. I knew from then on we were living with a time bomb, not knowing when it would go off.”

Sharry Swanson, about caring for her husband with pulmonary fibrosis during the final stages of his disease.

Read Sharry’s story in her own words

“It occurred to me that if we could geographically pinpoint where people were using their asthma inhalers, it would likely reveal new clues about the causes of asthma.”

David Van Sickle, a medical anthropologist and epidemiologist about developing sensor technology to identify patients who need help before they suffer a severe asthma attack.

Read David’s story in his own words

“I remember my grandmother saying, ‘Stephen, don’t be silly, nobody ever died of asthma’.”

Stephen Gaudet, about how little was known about the severity of asthma when he was diagnosed as a boy.

Read Stephen’s story in his own words

“If a child is going to be on medication for long periods of time, parents need to include the school in the treatment plan.”

Amy K. Schouten, RN, about making a plan for when children with chronic lung disease are well enough to make the transition back to the classroom.

Read Amy’s story in her own words

“My patients use their iPhone and Android apps to help motivate them to document symptoms.”

Enoch Choi, MD, a primary care physician and father of a child with asthma, about using technology to gain awareness about asthma symptoms.

Read Dr. Choi's story in his own words

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