Ask The Advocates: Understanding CF
We asked our advocates, "How old were you when you felt you truly understood what cystic fibrosis is? How did you feel at that time?" They had some interesting responses to share.
I understood CF at a young age
Response from Cheriz K
I started to understand how important time management and routine were when I started to do my therapies and meds on my own in junior high. Seeing friends with CF pass away at a young age matured me emotionally. This hardship really opened my eyes to the severity and complications of CF.
I had a lot of talks with my CF social worker at clinic during this time, which helped me to share my feelings and process everything. By the time I was in high school, I really understood a lot of details, like research, medications, complications, emotional and social impacts, and this is when I truly embraced my CF and started to see the positives that could come from CF. This encouraged me to get involved in the CF community, doing clinical trials, fundraising, researching, and socializing with others with CF online. These things led me to where I am now: blogging and sharing my story online.
I'm learning every day
Response from Janeil Whitworth
This is a tough question to answer. I think my understanding of cystic fibrosis has always reflected the life stage I was in and, therefore, is always changing. Even at 29, I doubt I truly understand what CF is and how it affects me.
I was first admitted to the hospital at age eleven for a “tune-up”. I think that’s when I began to understand the physical symptoms and treatment of cystic fibrosis. It felt unfair at the time, but I was determined to be “normal”.
In college, I remember realizing for the first time that I wasn’t going to work full-time in a traditional work environment like my peers due to CF. I lacked the time and energy to sustain a career like that. I knew I needed to really prioritize what I wanted to accomplish in my life. Motherhood has really made me look at CF through a new lens as well.
I learn something new about myself and my disease every day. Each realization is devastating in its own right and truly takes time to process and understand. However, adaptation is a wonderful, beautiful action word.
I understood the challenges as a young adult
Response from Nicole Driscoll
I think I understood what CF was (textbook meaning) at a very young age. I was the "CF Poster Child" for back-to-back years when I was in kindergarten to first grade, so I was exposed to many events in which my family and, eventually, I would speak at.
I knew how to explain what CF was and I knew what I needed to do to manage it. I even did reports and school projects in elementary school on CF to educate my peers, teachers and to learn more myself. I felt very well versed, but I never truly understood the challenges CF would bring until my young adult life. It was very sobering, but also reinforced why I was doing all I was to manage the disease despite often not having control over the symptoms and progression.
Does anyone truly understand cystic fibrosis?
Response from Megan Barlow
I don’t know if you can ever truly understand CF. It is such a complex disease that affects people in so many different ways. It is so individual, and I only really understand my own journey.
I do, however, remember significant moments when I realized some realities of CF. I was around 15 or 16 when the first person I “knew” passed away from CF. Our moms volunteered together and became close. Jenn didn’t seem much older to me, and hearing the news about her devastated me and showed me how terrible CF can truly be.
I didn’t have my first hospital stay or IV until I was 26. That was another moment that showed me, for maybe the first time, how hard CF could truly be. I was terrified for that first stay, and I truly hope I never have to go back into a hospital.
Understanding cystic fibrosis is an ongoing process and every day, week, year I learn more about my own disease. Now we have thrown new medications into the mix, and it’s a whole new learning process for so many of us.
What aspects of CF do you want to learn more about? (Select all that apply)
Have you (or a loved one) been experiencing any negative side effects from Trikafta?