Testimonial: 30 years living with cystic fibrosis... and running in pursuit of my dreams!

I was diagnosed at the age of 13, but I have actually been living with cystic fibrosis for 30 years. As a child, I constantly suffered from stomachaches, and every winter, one or more colds developed into pneumonia. Tired of being referred from the emergency room with a simple diagnosis of a cold, my mother turned to alternative medicine. This approach allowed me to live a relatively normal childhood without overprotection or excessive treatment.

My diagnosis finally came after a consultation for... foot pain. A pediatrician noticed that I was coughing frequently, even though we were no longer aware of it. Combined with a family history, this led to the sweat test. We know the result.

Adolescence and acceptance

At the dawn of adolescence, I was convinced that it was a misdiagnosis. I was not feeling well and did not recognize myself in the images conveyed of the disease. However, the treatments quickly improved my daily life: digestive enzymes, weight gain, disappearance of several pains. I integrated my treatments without difficulty.

It was around the age of 20 that I really accepted my condition, in particular thanks to my involvement with Provincial Committee for Adults with Cystic Fibrosis (CPAFK). For the first time, I met other adults living with CF who were alive and well, each at a different stage of the disease. This involvement allowed me to better understand CF... and to fully accept myself.

Well being... and the guilt

For a long time I felt guilty for being well. Why me, when others are not doing well? At 30, I don't have all the answers, but I accepted that each journey is different. My FEV1 is around 105%, I have never been hospitalized, and I dare to believe that this can give hope.

For more than 10 years, I have been actively involved with the CPAFK to defend the rights of people living with cystic fibrosis and to pursue the mission of the organization.

Dreams, life choices and exhaustion

I have always worked by goals. One dream at a time. Childhood, studies, autonomy, work, love. I chose to study civil engineering to quickly achieve independence. Graduated at 19, owner at 21, married at 24.

At the age of 27, however, professional burnout set in. Demanding work, home expansion, maternity plans, fertility... everything has accumulated. I decided to stop everything and refocus on agriculture, a deep passion.

This decision led me to further studies and then to an international internship in French Polynesia in 2013 — a dream come true.

And today

I am now pursuing the project of founding my greenhouse business. Family projects are also continuing, with new fertility clinic trials. I don't have a single definition of happiness. I try to combine chasing my dreams... and living in the moment to the fullest.

I chose to talk to you about the positive aspects that cystic fibrosis brought me: determination, the intensity of living, the impulse to dream. The more difficult aspects also exist, but I work every day to learn to live with them.

Testimonial by Charlène Blais
Magog

‍