I work with my care team to navigate age-related health challenges like menopause and osteoporosis and to build crucial knowledge for my future. Below is a conversation I had with the Cystic Fibrosis Foundation about how I approach aging with CF.

What does aging with cystic fibrosis mean to you?

Aging with CF is something I consider a privilege. It means I get to experience milestones that, not long ago, felt out of reach for people with this disease. As we enter uncharted territory, I have the unique opportunity to learn from and educate my CF care team about the realities of aging with CF. Together, we're navigating issues that weren’t previously on the radar — like menopause, osteoporosis, osteoarthritis, and other age-related conditions. These are challenges no one expected us to face, and now we get to explore them in real time, sharing insights and building knowledge for the future.

What new health challenges have your faced as you have grown older and how have you found help? 

I've needed to expand my health care team. I now work with a rheumatologist to manage an autoimmune condition, a cardiologist to monitor heart health, and an endocrinologist who oversees my bone density treatments and coordinates hormone therapy with my gynecologist. I also believe it's essential to have a knowledgeable sports medicine physician on board — someone who helps me maintain joint health and stay as active as possible as I get older.

What have you learned as aging increased the complexity of health care for you? 

I’ve realized the importance of becoming an even stronger advocate for my own health care. That means keeping a health journal to track symptoms, treatments, and changes over time — and recognizing when it may be necessary to seek a new provider if my care needs aren’t being met.

What do you want the future of aging with CF to look like, and what conversations do your think people with CF need to have now?  

We need to start openly talking about what it means to be women aging with CF. How does menopause affect us, and how are we managing those changes? We should also be discussing sexual health — how to maintain intimacy and a fulfilling sex life as we grow older. 

Beyond health, it’s important to plan ahead: finding trusted elder care attorneys to help with retirement and long-term care, working with skilled financial planners to secure our futures, and building strong support networks to lean on as our health care needs evolve. These conversations matter, and they can empower us to age with dignity, security, and joy.

You can watch Jen's story during the plenary 2 video:

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