For Those With Cystic Fibrosis, Social Distancing Isn’t New

The past two months have mandated sudden and intrusive changes to the way nearly everyone goes about their lives due to the threat of COVID-19, but one community has lived with similar restrictions for years.

For members of the public living with cystic fibrosis, medical masks, social distancing, and reduced contact have been the norm within the community. For those with cystic fibrosis, a genetic illness that impacts the lungs, digestive system, and other vital organs, social distancing and wearing facial masks are long-established practice.

There are about 30,000 cases of cystic fibrosis in America, according to the National Organization for Rare Disorders.

Middletown Supervisor Anna Payne has cystic fibrosis and has advocated on behalf of those with rare diseases.

Payne hopes that the public hearing from people have lived with these guidelines for many years will make it easier for the community as a whole to adapt and get used to the idea of the new public health policies.

“As for our community, social distancing and infection control procedure will continue to be a part of my life for as long as I live in order to keep my fellow cystic fibrosis friends safe. No hugs, no lunch dates and no getting closer than six feet apart,” Payne said.

“Apparently, I’ve been training for a pandemic my whole life,” she said. “All of what is going on, we can relate to it.”

The guidelines are not comfortable for many, but they are much preferable to continued unmitigated spread of the disease.

Those with cystic fibrosis are placed in a high-risk group for COVID-19. As it stands now, members of the community with chronic illnesses like COVID-19 will likely be last to break shelter-in-place measures.

“One day in the near future we will be able to be closer than six feet apart, and we will be able to hug our loved ones,” Payne said. “I’m looking forward to that day.”

Watching the rise of COVID-19 has been stressful for people in the cystic fibrosis community, Payne said.

Desiree Cummings lives in Falls Township with two children with cystic fibrosis. For Leah, 11, and Braeden, 10, the rising number of COVID-19 cases has not changed too much in their daily lives.

“I want to say I’m more afraid for them, but I think when you deal with chronic illness you know yourself and your body better than your average person,” Cummings said.

Cummings explained that in the grand scheme of things not much has changed for her family. Leah and Braeden don’t touch things when they do need to go out in public, they take care to keep their distance, and they also wash their hands regularly and thoroughly to keep healthy.

The Cummings family uses Amazon to order essentials and only runs out on essential errands. Leah and Braeden can’t accompany their mom on essential trips, which they don’t necessarily mind, but they do miss their friends and school, she explained.

Payne explained that COVID-19 mitigation measures are important to keep everyone healthy.

“I hope that when people are struggling with the idea of social distancing and infection control they can look to the cystic fibrosis community for hope and inspiration. We have been doing this for years as part of survival, and we are now counting on the general population to do it and keep us safe. We know it’s not easy or comfortable, but if we can power through, we can save lives,” Payne said.

Until mitigation measures are lifted, Payne encourages everyone to embrace the new normal in order to reduce the flow of disease and protect as many people as possible, including those who are already compromised.

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