Adult Cystic Fibrosis (CF): Share your story & connect

Posted by Colleen Young, Connect Director @colleenyoung, Dec 9, 2025

Adult cystic fibrosis (CF) is a genetic condition that can cause multiple health complications, such as lung damage, liver disease, nutrient malabsorption, cystic fibrosis-related diabetes, gastrointestinal issues, bone disease, male infertility and others.

Finding out that you have CF as an adult often is a long journey of medical appointments, testing and searching for answers. You may have questions and likely have a story to tell.

This is a welcoming, safe place where you can meet people who know first-hand about living with a CF as an adult. Together we can learn from each other and share about challenges and triumphs, setbacks and the things that help.

Pull up a chair and introduce yourself. When were you diagnosed and how are you managing today? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Cystic Fibrosis Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 9 4:03pm

Hi @ckscoville @lindam272 @tinaesims @gails53 @mtyler @pb12nyc @robot @gails53 @ritapearl @kattyk @303wendy @belizeanmarky @lindagmilne123 @lenorj @helen1000,

I want to share with you that there is now a forum/support group on Mayo Clinic Connect dedicated to cystic fibrosis. Follow the group to get updates in your digest email and connect with others living with CF.
- Cystic Fibrosis support group https://connect.mayoclinic.org/group/cystic-fibrosis/

lindam272 | @lindam272 | Feb 9 4:44pm

In reply to @colleenyoung "Hi @ckscoville @lindam272 @tinaesims @gails53 @mtyler @pb12nyc @robot @gails53 @ritapearl @kattyk @303wendy @belizeanmarky @lindagmilne123 @lenorj @helen1000,..." + (show)

@colleenyoung Thank you! Linda

jnmy | @jnmy | Feb 9 4:46pm

In reply to @colleenyoung "Hi @ckscoville @lindam272 @tinaesims @gails53 @mtyler @pb12nyc @robot @gails53 @ritapearl @kattyk @303wendy @belizeanmarky @lindagmilne123 @lenorj @helen1000,..." + (show)

@colleenyoung Thank you Colleen, but I don’t have cystic fibrosis. I have learned a lot from participating in this forum.

helen1000 | @helen1000 | Apr 14 9:06am

Just got approved for Trikafta!

Pug, Volunteer Mentor | @ckscoville | Apr 15 7:38am

In reply to @helen1000 "Just got approved for Trikafta!" + (show)

@helen1000 That's wonderful, Helen. I'm sure everyone may react to a new medication differently, but my own adjustment to Trikafta included a "purge" of junk from my lungs in the first few days. Actually, I was very pleased to be getting rid of that stuff! After the first few days, everything settled down and my coughing episodes were significantly reduced from my pre-Trikafta days.

Pug, Volunteer Mentor | @ckscoville | Apr 16 6:09am

In reply to @helen1000 "Just got approved for Trikafta!" + (show)

@helen1000 To help others out who may be in the same situation, let us know how the Trikafta works for you.

helen1000 | @helen1000 | Apr 16 6:56am

In reply to @ckscoville "@helen1000 To help others out who may be in the same situation, let us know how..." + (show)

@ckscoville Thanks for sharing. Yes Will provide an update after I start it.

blashatw | @blashatw | 7 hours ago

In reply to @ckscoville "@colleenyoung I am so grateful for a place for those of us with Cystic Fibrosis. Thank..." + (show)

@ckscoville
Hi. I was diagnosed with CF at age 73. I also dealt with hospital visits for asthma, pneumonia and different lung issues through out my life. My lung collapsed and then I was sent to a Pulmonary expect that did a battery of tests for a couple of months until I was diagnosed with CF . I was put on new treatment including inhaling salt water using a MediPro Nebulizer each morning. My lung has now inflated back to normal and my breathing is much better. I hope you feel better soon. keep chatting it helps to share.

Pug, Volunteer Mentor | @ckscoville | 1 hour ago

In reply to @blashatw "@ckscoville Hi. I was diagnosed with CF at age 73. I also dealt with hospital visits..." + (show)

@blashatw Your experience is so similar to mine. I'm glad your lungs are in much better shape now. Were you put on any medications in addition to the nebulizer treatments?