Earlier this week, I asked the community via Instagram when their first sweat test for diagnosis was. The array of answers made me realize how widely our cystic fibrosis diagnosis stories vary. CF sometimes can present itself in ways that make diagnosis as an infant obvious, or a family diagnosis can provoke a parent’s diagnosis well into adulthood.
Following is a collection of different experiences shared by our community in interviews with me:
I was tested for CF at 8 months old. I had fallen off of the growth chart, and my parents were told they should have me tested “just to rule it out,” but instead, the test led to my diagnosis. When my family got the results, my mom said that she just knew I was going to be OK and that she couldn’t listen to the statistics. As an adult, I applaud my parents for not allowing the weight of my diagnosis to crush their spirits. I’m very fortunate to have a positive and supportive family. Such an early diagnosis meant that I never “discovered” that I had CF. I can’t remember a time where enzymes and physiotherapy weren’t a part of my everyday life.
When I was 5 years old, I asked my mom if I could die from CF. She admitted that people could die from CF, but that I didn’t need to be fearful of it. That was the first time that it clicked. I realized that cystic fibrosis didn’t just mean tummy aches and being force-fed salty snacks. I was glad to know the truth. It gave me a better understanding of the importance of my medications and therapies. I’m so thankful for my mom’s gentle honesty.
I am now 23 years old with a 7-month-old daughter, and I think my true understanding of this disease is always evolving. I have, and will continue to have, moments where it “clicks,” like when I administered IV antibiotics at home for the first time, when I had to medically withdraw from my university, or when I was experiencing complications of in my pregnancy. I’m constantly having moments of realization, anxiousness, and ultimately, acceptance.
I am currently 24. I was diagnosed with CF right before my 16th birthday in 2010. I was tested because for my entire life I had what they thought was terrible allergies and “faked” stomach pains — every doctor I had seen was adamant that I was faking to skip school.
My dad, who is in the U.S. Army, got stationed in Hawaii, and the military hospital just so happened to be a CF center. After a few visits for the same [stomach] issues with my new doctor there, he believed my symptoms and was determined to help me. He put together all the pieces, met with the CF team and decided to sweat test me. The first [test] was borderline, as was the second. So, we did genetic testing and it came back to show I carried the deltaF508 genes — two of them. Once I was diagnosed, they tested my entire family and my mom was diagnosed in her mid-30s. We were all really shocked; we had never even heard of CF before!
I’m 36 now, and I was diagnosed with CF later than most, at 11 years old. The only reason I was even tested with the sweat test was because my brother was diagnosed at age 9 after his lung collapsed. It was standard to test everyone in the family, and I was the only other person who had CF. Because I was healthy, played sports, and didn’t appear sick, the focus was not on my illness but on my brother, who was having symptoms.
I remember being 11 years old at Stanford and getting the diagnosis. I didn’t know what it was but I knew that it was bad. My brother passed away when he was 21, and I was 22. That was almost 14 years ago. If it wasn’t for him, I probably would have gone undiagnosed or misdiagnosed for years because my symptoms were so mild when I was younger. And though I knew I had CF, It didn’t click for me when I was young that I needed to work to take care of myself. It wasn’t until college when I started to feel more symptoms that I started to be more compliant and dedicated to my treatments and my care. I’m still a work in progress, and I’m doing my best every day.
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