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CF Community Blog

The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.

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Ryan holding his two daughters at the finish line of a race


Learning to Fuel My Body as a Runner With CF

When I realized how much my nutrition strategy was impacting my performance as a marathon runner, I decided to reevaluate my plan to be more intentional about how to best fuel my body before running.

Ryan Grass headshot
| 5 min read
Carolanne holding her baby, Bellamy, and smiling at the camera during a family photoshoot.


Learning to Meet the Nutritional Needs of My Baby With CF

My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.

Carolanne Cimino
| 11 min read
Patrick wearing a purple chef uniform.


Becoming a Chef Has Helped With My CF

Once I started Trikafta®, I became healthy enough to go to culinary school and become a chef.
By learning how to cook diverse cuisines, I improved the quality of my own meals, ate more, and have been able to maintain my weight. 

Patrick Allen Brown
| 6 min read
Liz feeding her daughter Patricia


Helping My Daughter Learn to Like Food

My daughter was born with cystic fibrosis and with an aversion to food. Teaching her to enjoy meals has been crucial to helping her grow and stay healthy.

Liz Frater headshot.
| 5 min read


How I Avoid Making Different Meals for Each of Our Family Members

Cooking for a family of three -- one of us with CF and all of us having different diets -- makes mealtime complicated. It's taken some time, but I finally found the key to satisfying our whole family's needs at dinnertime.

| 5 min read


What It’s Like to Experience Food Insecurity as a Person With CF

Food insecurity is a widespread problem that also touches the cystic fibrosis community. I should know -- I have experienced it myself and had to accept government assistance to buy food.

| 8 min read


How I Found Acceptance for My Trikafta Weight Gain

As a person with cystic fibrosis, I struggled all my life to gain weight, despite eating a high-calorie, high-fat diet. Once I started Trikafta® and my weight increased to normal levels, I had to learn a new, healthier way to eat.

| 7 min read


My Son's Feeding Therapy Journey

My son has had a problem with eating ever since he was born prematurely and diagnosed with cystic fibrosis. After a lot of stress and anxiety about reaching his weight goals, we finally enlisted an occupational therapist, who helped him learn to love eating.

| 8 min read


Dealing With Body Issues as a Teen With CF

Although your teenage years can be difficult, they ultimately help mold you into the person you are meant to be -- especially when you have a chronic disease, like cystic fibrosis.

| 5 min read


Changing How I Eat Post-Transplant

After my lung transplant, I discovered I couldn't keep eating the typical high-calorie CF diet. By learning to practice mindful eating, I have found a new way to enjoy my food.

| 5 min read


Food for Thought: Lessons From My Son’s Road to a G-Tube

I've written about how tough a decision it was to get my son, Major, a gastrostomy tube. I also wrote about the benefits it has provided. Here's what the process taught me.

| 4 min read


I'm Not Lucky to Have Difficulty Gaining Weight

People often envied my skinniness, but they didn't realize that CF made it difficult for me to want to eat -- or to get enough nutrients from -- the food that I did.  

| 5 min read