[kristina]

I was officially diagnosed with CF at 40 — in 2015… ten years ago! One CFTR variant was on my state’s 23-variant screening panel. The other? Part of the 39-variant panel—only added in 2022 by my state. Imagine the others missed in the years in between—or those with variants outside the current panel entirely. And consider the many states still behind to implement their CF variant panels ……

At age 13, I had a positive sweat test. My symptoms didn’t match a cousin diagnosed at birth, so my parents assumed it was a “fluke.” For nearly 30 years, I lived in the in-between: sick, treated for countless conditions, but never re-tested for CF. Even when prenatal testing confirmed I was a CF carrier, every physician dismissed it in relation to any of my symptoms.

Sinus infections. Asthma flare-ups. Abdominal pain. Pancreatitis. Emergency rooms. Antibiotics. Nebulizers. Steroids. Dehydration. Exhaustion. Yet no physician ever considered CF—until an experienced ENT finally connected the dots and ordered a full CF genetic test.

Decades earlier, updated adult protocols and screening could have saved me years of uncertainty, missed work, financial strain, and the mental toll of my symptoms being dismissed by physician after physician.

…… I was missed >>we were missed >> because CF wasn’t on anyone’s radar. Adult physicians often don’t know how to recognize CF or even what to do about it even when they might suspect it. Specialists don’t communicate—they focus on one symptom at a time, never seeing the bigger health picture. I had to become my own advocate, care coordinator, and educator (I still am). The CF system wasn’t built for adults like me >> like us —and it’s failing others!

Stories like ours are still overlooked. People right now need advocacy, mentorship, and connection. That’s why I’m fighting for change—not just awareness—because the CF system needs to act now.

If you want to join a network of late CF-diagnosed adults making a difference, email me: [email protected].

Together, we can make sure no one else falls through the cracks—because who else is stepping up!? Our collective story matters, the CF system and broader community needs to hear it!

[kristina]

While this may not answer the question directly, I wanted to share a wonderful CF organization focused on spouses: https://www.projectcfspouse.org. Active on all major social media platforms, they frequently share insightful articles and podcasts. Founded in 2016, Project CF Spouse is dedicated to providing resources and support to spouses and partners of individuals with cystic fibrosis.

projectcfspouse.org

Home | Project CF Spouse

Project CF Spouse is a nonprofit organization that is dedicated to providing resources and support to CF spouses and partners in the CF community.