A Q&A with Berne and mom!

Q: What are you up to?

Berne: I have been going to school at Iowa State for Community Regional Planning. This is my second year. Right now, I’m preparing for finals next week. I work at the Rec, doing outdoor landscaping. I’ll work the same job this summer. 

Q. What do you like to do for fun?

Berne: Outdoor sand volleyball, going out in nature, hanging out with my buddies and cooking. I’m headed to Oregon for a few weeks this summer to see my cousins. 

Q. How’s your health?
Berne: My cf health is great and my lung function is really high. 

Q. How is your life different before and after Trikafta (the super drug I started to take in 2019)?
Berne: Before I had to do lots of therapy (30 minutes twice a day at least.) I was sick a lot, especially with lots of GI stuff. I spent a lot of time with my doctors and at the hospital especially when I was little.

Now CF is not my first thought every day. CF has a little less impact on my daily life. 

Q. What do you do to try to stay healthy?
Berne: I've been trying to make my diet better. I cut chocolate milk out of my diet which you may know was my main food group for a long time. It was a good way for me to get my calorie intake, but not the greatest for my non-CF related health. I don’t live in the dorms, like I did last year, so I’m getting enough food. Now, I need to focus more on what I eat to meet my actual daily nutrients, not just calories.

Q. Can you talk about the research studies you’re in?
Berne: I'm in a study about CF diabetes and another research study to find a better way of measuring your BMI, which is really important for CF patients. They do a bunch of different kinds of testing. I think it would be super impactful because how we measure now is not accurate. It gives an idea, but it doesn’t give the full picture of how healthy you actually are.

Q. Why are you supporting the CF foundation?
Berne: Because I see how far we’ve come. When I was born the life expectancy was 33 and now it’s up to… living a full life.

A few years ago at an internship where I met a Dad with a kid with CF who was five or six and he had never been in the hospital. I realize my health was really bad when I was born. But, it’s wild that he has never been hospitalized.

This tells me that CFF is doing their part helping to make our lives significantly better. Especially for the new kids being born with CF; they can live a full life or at least live a life less inhibited from the disease. They won’t have the huge scars that I have on my belly or scarring in my liver and pancreas that I can’t fix. They may not ever have to deal with many of the issues that I had to deal with, so I am a huge supporter of CFF.

What do you want people to know? I want to thank all my friends and family who have supported the research and treatments for CF so that we can all live life to the fullest - like everyone else who isn’t born with chronic illness.