Although I was disappointed that the Volunteer Leadership Conference was transformed into a virtual event this year, I know that this was the best decision to keep the cystic fibrosis community safe during the coronavirus outbreak.
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Patrick Flume, MD, is a pulmonologist and the director of the adult cystic fibrosis center at the Medical University of South Carolina and part of my care team. For National Doctor's Day, I had the opportunity to sit down with Dr. Flume and ask him some questions about CF, his approach to CF care, and how it's changed during his career.
We're spotlighting five programs the CF community can join from the comfort of their own homes. From singing lessons to exercise programs, you can stay physically and mentally active and connect with others while physically distancing.
We're spotlighting two authors who have written books based on their experiences with cystic fibrosis. Learn what the experience of writing them has meant for them, and what they hope their readers will get from reading their stories.
The expression, “It takes a village,” sometimes seems to apply to my clinic visits. I like having my family accompany me. They support me emotionally and help me keep track of important health information.
Everyone with cystic fibrosis faces the fear that their next infection could be the one that doesn't respond to treatments. Chronic infections eventually led to my sister's death. After seeing what she went through, it became clear to me that we have an immediate need for better anti-infectives.
As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.
Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing, a podcast, or video, their work has been shaped by their experiences of living with CF. Learn what creating these works has meant for them and what readers and listeners can take away.
As a professional vocalist, for most of my life I tried to hide my CF. But, after opening up about my disease and creating a program to help others through singing, I realized just how powerful my voice really is.
I didn't know whether to cry on my surgeon's shoulder or punch him. In the end, I did neither. I looked back at him, dug deep, and said over and over again, “No. I won't sign.”