When dreams come true, but habits remain

This meme image, often seen on social media, may bring a smile — but behind it lie significant changes in the lives of people with cystic fibrosis. And these changes require a new approach.

Before the advent of gene modulators, life with cystic fibrosis meant a constant struggle for every kilogram. Food was poorly absorbed, energy was lacking, and being underweight made it harder to fight lung infections. Treatment protocols clearly stated that a person with CF should consume 1.5–2 times more calories than a healthy individual. Therefore, there were no dietary restrictions — you could and should eat whenever you wanted and as much as you wanted.

For many patients and their families, this constant focus on gaining weight became a lifelong habit. With the introduction of gene therapy, the body finally began to function properly. Food is absorbed the way it should be. And suddenly, all those calories, fats, and carbohydrates that previously “passed right through” started to stay in the body. For some, this became a dream come true — finally a normal weight! But for others, a new problem emerged: excess weight.

Excess weight is not just about appearance. It puts strain on the cardiovascular system, increases the risk of new comorbidities, and creates new challenges for a body that has already endured a long fight.

In the comments of cystic fibrosis patient communities on social media around the world, this topic is being discussed more and more often. Many people are happy — finally no longer looking exhausted, having more energy for life, and finding it easier to cope with lung problems. But increasing concern is also evident: how do you change habits formed over a lifetime? How do you learn not to overeat? How do you cope with depression caused by weight gain?

Our doctors have had the opportunity to study the experience of other countries where gene modulators have been used for a long time. They recognized this issue in advance and are ready to work with each patient individually. Together with your doctor, you can determine the daily calorie intake that is right for you, create a balanced diet, and gradually change eating habits.

Doctors also emphasize the importance of an active lifestyle. Sports and physical activity should become part of your daily routine. This does not have to be professional training — even daily walks, swimming, yoga, or dancing can become your allies in maintaining a healthy weight.

Gene therapy has given us a new reality where it is possible to live a full life. But this reality requires new approaches. Do not hesitate to talk to your doctor about changes in weight. Do not be afraid to ask for help in changing eating habits. This is a normal process of adapting to a new, healthier life.

We have come a long way — from fighting for every gram of weight to having the opportunity to maintain a normal weight. Now our task is to learn how to sustain a healthy balance. And we will manage this — together with doctors, together as a community.

If you notice changes in your weight after starting gene modulators, talk to your doctor. Together, you will find the best solution for you.