The Cystic Fibrosis Registry Global Harmonization Group, including the Cystic Fibrosis Foundation, published findings from the first global study on the impact of COVID-19 on children with cystic fibrosis in the Journal of Cystic Fibrosis.
Having to isolate from our loved ones after the birth of our first child -- right as the COVID-19 outbreak hit our community -- was doubly difficult, but with a little education, our support network came through for us.
As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.
Because my husband has cystic fibrosis, I take extra precautions to protect him from COVID-19 exposure. That is why I can’t continue to have relationships with friends and family who refuse to get vaccines or wear masks. They are putting my husband -- and others like him -- at risk.
Because I am immunocompromised after having a lung transplant, I still take extra precautions with COVID-19. I still feel awkward with turning down invitations and limiting my own guest list at gatherings, but I know my closest family and friends understand and do whatever they can to accommodate me.
What I thought was a cold turned out to be COVID. I shared my positive test result with my CF care team. Not only did they let me know of an important drug that was available to reduce the risk of getting severe symptoms, but they also helped me find it since the drug was in short supply.
Having CF has always involved doing things nobody else around us is doing because, well, we have to — and COVID-19 won’t be any different. As a post-transplant CF patient who happens to be a practicing pharmacist, I am writing about the tools we now have in a world of limited universal restrictions and precautions.
I’ve had to make many changes in response to the COVID-19 pandemic to protect my health. Not all the changes were welcome, but now that I’ve adjusted, I’m enjoying my new normal.
The Cystic Fibrosis Registry Global Harmonization Group published in the Journal of Cystic Fibrosis updated data on the impact of COVID-19 on people with CF. The manuscript reports on 181 people with cystic fibrosis from 19 countries diagnosed with COVID-19.
In my experience, the best way to support a loved one with cystic fibrosis is to listen closely and remember the details of his or her most common treatments and complaints.