If you have Cystic Fibrosis, COVID-19 is a death threat

Woman living with CF upset that others don’t realize how serious coronavirus is.

Jordan Heuvelmans 4 minute read March 23, 2020

COVID-19 is a real threat to people living with compromised immune systems. Stock/Getty

Allie MacIsaac remembers watching a video where Queens students continued to party on St. Patrick’s Day this past week despite the government advising people to practice social distancing. What shocked her was watching one student replying that despite being immunocompromised, they weren’t worried about partying.

MacIssac, who lives with Cystic Fibrosis (CF), was shocked.

“It completely shook me,” she said, adding that she couldn’t believe with all the warnings for people whose immune systems were compromised to take extra precautions that someone would take such a risk.

CF is an immunocompromised condition that is one of the most common fatal genetic diseases affecting Canadian children and young adults. Primarily affecting the digestive system and lungs, symptoms include frequent chest infections due to an accumulation of a thick sticky mucus in the lungs, which often causes pneumonia.

“The immune system is perturbed,” says Dr. John Wallenburg, chief scientific officer of Cystic Fibrosis Canada and a CF parent. “There are cycles of infection followed by dramatic inflammation that doesn’t help to resolve the infection, but also aggravates and causes damage to the lungs.”

CF differs for everyone — cases can vary from mild to severe. People living with CF have to manage persistent and ongoing lung infections, with the loss of lung function and lung destruction eventually leading to death in the majority of people with CF. However, some people are able to get double lung transplants.

Wallenburg says that complications caused by CF include having difficulty digesting fats and proteins, malnutrition and vitamin deficiencies because of the inability to absorb nutrients, progressive lung damage from chronic infections and inflammation, CF-related diabetes and sinus infections. And while there are treatments available to treat symptoms, currently there is no cure.

Although MacIsaac’s condition is mild, she needs treatment to help manage symptoms like shortness of breath and frequent chest infections. Since she was diagnosed when she was one month old,  MacIsaac has always been proactive about maintaining an active lifestyle by going to the gym multiple times a week, and checking her blood sugar frequently as a diabetic.

As the COVID-19 pandemic continues to spread across the world, everyone is worried about their health, especially older adults and those with preexisting health conditions. Staying away from others has become top priority for many.

For people with CF, it’s not just avoiding getting sick, you’re now avoiding potential agents of death

Having been in self isolation since last week, MacIsaac has been taking precautions to protect herself from COVID-19. Until about a few weeks ago, COVID-19, “wasn’t even on her radar,” but seeing the rise in cases made start worrying about her own health.

“[in my mind] I’m like, okay I have a life, I have school, work and the gym to go to, how can I stop that?” she says. “And it was like ‘Oh, the reality is you need to stop that now just in case to stay healthy.’”

While she’s taking care to protect herself, seeing people who aren’t practicing proper social distancing has been troubling. She says she still sees people on social media going out despite the government and Health Canada’s warnings about social distancing.

“I don’t understand where the disconnect is. If everyone else in the province is taking these extreme precautions [like restaurants]…it’s a big in-your-face deal right now,” she says. “I don’t understand how it’s not being taken more seriously.”

Wallenburg says that he can see where some people are coming from, as they themselves don’t feel vulnerable, but there’s a need for working together to practice social distancing.

“The message is that it’s a little bit like herd immunity,” he says. “What you’re doing is social responsibility. It’s not necessarily for you, but for the people around you and the most vulnerable in society.”

“Everybody else is going around like ‘oh well we gotta be careful, wash our hands on a regular basis,” he says. “For people with CF, it’s not just avoiding getting sick, you’re now avoiding potential agents of death much more than the healthy middle-aged average Canadian. I can see why people with CF are really hypervigilant and concerned right now.”

MacIsaac says she is upset that others don’t realize how serious the situation is, and how much of a positive impact they can make on the lives of at-risk individuals by social distancing and taking appropriate precautions. This motivates her to keep sharing her story and raising awareness for the challenges that at-risk individuals face during these uncertain times.

While waiting out to see how the next few weeks play out, MacIsaac is optimistic about the turnaround on COVID-19 in the coming weeks. “It’s in my bones to be optimistic,” she says. “As much as we see a lot of panic and the negative stuff in the news, there’s also lots of positives about the tens of thousands of people who’ve recovered from it. There are little gems of hope to hold onto.”