I’m a young woman of 22, excited by the world around me and the people I love.
My mother, Manon, and my father, Jacques, learned they had a bad gene about two months after I was born. No other cases of cystic fibrosis (CF) had been diagnosed in the family. My parents knew that I was sick because I couldn’t stop vomiting and wasn’t gaining weight. Obviously, it came as a shock, they were afraid and wondered what was going to happen. However, the pneumonologist explained to them that we were fortunate in our misfortune. Medicine was evolving, new drugs were being developed, and there were experts to guide us through the labyrinth of living with CF.
My adolescence was a roller-coaster ride. The day after my thirteenth birthday, my father lost his battle with cancer. I had some very hard times; where my honesty about the disease was challenged, when I was made fun of and treated differently.
Cystic fibrosis is a degenerative chronic disease, and unfortunately, even when you say it and try to explain its impacts, many people don’t get it, because you seem to be physically okay. Cystic fibrosis is much more than a disease that attacks the lungs. It affects us both physically and psychologically. Having to prove that you don’t feel well, being stared at because of the cough that constantly tickles your throat, being told that you’re exaggerating how bad you’re feeling and having difficulty keeping up with others is challenging.
In 2018, I started a vocational program in cosmetology and two months before my graduation, I had to be hospitalized. For two years I couldn’t go to school or work. My health was too fragile, I was constantly suffering from a superinfection. I lost more than 40 lbs in less than six months. I often found myself asking questions, wondering why it had happened to me. From then on, I started to see myself from a different perspective, and eating disorders started to haunt my daily life.
Today, I am lucky enough to access the drug Trikafta, and I am being treated at Douglas Hospital for my eating disorder. I started Trikafta on November 8, 2021. My lung function has increased by more than 20% in three months (from 51% on 08-11-2021 to 73% on 02-02-2022). A number of white spots on my x-ray got smaller and some even disappeared.
Having access to Trikafta literally means re-learning how to breath and having a chance to live again. I am now a healthy weight, and my greater lung capacity gives me more energy. I hardly cough at all anymore, and I expel secretions much more easily. Each of the previous modulators I was on allowed me to “breathe” better for a while, but Trikafta has been the chance of a lifetime. It gives me more time. I have been able to restart my education, remotely, but it makes me very happy. I am also so fortunate in having a wonderful family and boyfriend who are present and give me an enormous amount of support.
Although I would never wish it on anyone, I know that living with cystic fibrosis has helped me understand a lot of things. It has helped me mature and see life around me from a different perspective. It has helped me to excel, to realize that I am more than just a disease, and I should not be defined by it. I’ve learned about letting go and focusing on the real priorities in my life. Living with cystic fibrosis has invited me to ask questions and understand where I stand and what I want from our life. I am determined to enjoy small triumphs after each battle, even the smallest ones. I have found it important to understand the stages of the disease, my treatments and medications, and to become involved in projects and campaigns.
I believe that no one should have to suffer and live the way I have lived, when there are modulator drugs out there that could help. It shouldn’t be a question of “who’s the sickest”. It pains me to know that some people can’t have access to drugs because they are “too healthy”, and they must get worse to be eligible. I want everyone to have the right to a drug that gives us a new will to live and not simply survive between periods of antibiotics. I think that as soon as the disease is diagnosed, the ultimate goal should be to keep us healthy as long as possible.
In the future, I hope to see more treatments, or drugs, to simplify our lives, let us catch our breath from time to time and help us to live the way normal people live. I would like to think that one day, I won’t be afraid to become a mother and be stressed about passing my disease on to my children, if my spouse has the gene too. For the future, I want the CF community to always aim higher, to have the same average lifespan as everyone else, not to be treated differently, and for cystic fibrosis to be a disease that everyone has heard of.
Send a letter to your elected official and ask that they ensure Trikafta is funded for everyone aged six and up who can benefit. It’s more important than ever that we make our voices heard!