I first met Stacey Fogarty-Brown when I decided to travel to Egypt to meet CF families and learn more about the CF community there. Stacey joined me on that journey, and together we saw firsthand the challenges facing people with CF around the world.
Stacey is a Registered Dietitian Nutritionist at Michigan Medicine and a Certified Advanced Cystic Fibrosis Dietitian. She has spent years helping people with CF and their families navigate the complicated world of nutrition. I’m grateful we were together on that trip, and even more grateful that our friendship and shared passion for the CF community have continued ever since.
As a CF mom, I remember when nutrition was one of the biggest conversations we had at every clinic visit. Calories, fat, weight gain, it sometimes felt like everything revolved around getting enough food into my daughters.
But CF care has changed dramatically, especially with the introduction of highly effective modulators like Trikafta. And with those changes, the conversation around nutrition has changed, too.
One of the things Stacey emphasized is just how individualized nutrition needs to be for someone with CF. Two people can have the same mutations and still have completely different nutritional needs.
Stacey also explained the difference between a registered dietitian and a nutritionist and why working with a dietitian who understands CF can be so important. Nutrition isn’t simply about following a list of foods. It’s about looking at the whole person, their health, their lifestyle, their culture, their food preferences and what their body needs.
As Stacey says, “It’s very, very individualized.”
That really resonated with me. As parents, we want answers and we want to know we’re doing the right thing. But with CF, sometimes the answer is simply: it depends.
We also talked about how much CF care has changed since modulators became available.
For so many people with CF, Trikafta has been life-changing. We’ve seen improvements in health, growth and life expectancy, and that has changed the way families and care teams think about food.
For years, the message was essentially: eat more, eat more calories, eat more fat.
Today, the conversation can be much more balanced. Fruits and vegetables, overall nutrition and listening to your body’s hunger and fullness cues can all have a place in a person’s diet. And getting kids to start working out at a young age is crucial.
That doesn’t mean nutrition is no longer important. Quite the opposite. It means we’re learning more about what people with CF need as their health changes.
This was probably one of the most important parts of our conversation for me personally.
As a mom, there is a very fine line between making sure your child is getting the nutrition they need and creating anxiety around food.
I look back now at some of the things I worried about with my daughters and realize there were food issues I didn’t even recognize at the time. When you’re constantly being told that your child needs to gain weight, it can be difficult to know where that responsibility ends and where normal eating begins.
And now, with modulators and changes in weight and metabolism, some families are facing an entirely different set of challenges.
Stacey and I talked about the importance of recognizing the psychological side of eating, body image and weight. Families need to feel safe talking about these issues without feeling judged.
Another message I took away from our conversation is that families shouldn’t have to figure this out alone.
A good CF care team should include open communication between the person with CF, parents when appropriate, the dietitian, physicians and other members of the care team.
And nutrition has to fit the individual, not the other way around.
That can mean taking cultural traditions, religious practices, food preferences, finances and family dynamics into consideration. It’s about finding realistic solutions that work in someone’s actual life.
Stacey said something I loved: “We’re just gonna take it a day at a time.”
I think that applies to so much of living with CF.
Our CF community is indeed our family.
Stacey talked about how CF families become part of the lives of the healthcare professionals who care for them. She said, “The CF families become our families.”
I understand exactly what she means.
There is something incredibly powerful about being around people who understand this journey. They understand the worry, the victories, the setbacks, the endless appointments, and the hope.
Nutrition is just one piece of the CF puzzle, but it’s an important one. And as CF treatment continues to evolve, we have to be willing to evolve with it.
For me, this conversation was a reminder that there isn’t one perfect way to manage nutrition with CF. There is learning, adjusting, listening and continuing to have honest conversations.
And most importantly, families don’t have to do it alone.
Listen to the full conversation with Stacey Fogarty-Brown to hear more about nutrition, CF, modulators, weight, food and the challenges families are navigating today.