Breathing as a Battle: What It Means to Live with Cystic Fibrosis
We are in the holiday season. Everyone is caught up in the excitement of preparations: what to put on the festive table, what gifts to buy for their loved ones, where to spend these special days—maybe with friends, maybe with family, or even on a vacation abroad. However, these concerns, ordinary for a healthy person, are impossible for a patient with cystic fibrosis. While some look forward to the magic of Christmas or New Year's, patients with this rare disease are focused solely on how to survive. Up next, we present the story of Jasmina Rogozenco, a 25-year-old from the Cahul district, who is battling cystic fibrosis.
"Cystic fibrosis is the enemy I find incredibly hard to talk about. It’s easier to spend hours thinking about how much I hate living with this cruel curse than to write down three sentences about it. If I were to put my thoughts into a book, people would think they were reading a ritual to a dark world – that’s what cystic fibrosis has done to my thoughts and personality. Day after day, I have to do procedures, inhalations, take pills, and once a year undergo intravenous treatment. Is it even worth fighting for a life like this, knowing that some people are lucky enough to receive the miracle drug and will never experience the symptoms of cystic fibrosis?
In a world where medicine is advancing at an astonishing pace, I should have had access to the treatment necessary for a beautiful life. But I’ve always been let down, and because of this, I no longer make wishes during the holidays. No matter how much I wish to be well, if the universe doesn’t care about what I desire, then there’s no point in hoping anymore.
People with cystic fibrosis need help, but this illness places us in extremely embarrassing situations. At some point, we become the laughingstock of society, which looks at me with disdain when I have a coughing fit in public. Instead of minding their own business or asking if I need help, people tell me to stay home.
I don't expect people to empathize with me, as my illness is invisible and only puts me in uncomfortable situations. I have to look awful for others to understand what I'm going through – something that's not worth it just to be understood. I notice that when it comes to other illnesses, which aren't as rare, patients are helped, supported, and never marginalized, as we are, those with cystic fibrosis. If I were to ask for help, people would laugh and say, "Hey, you have hands and feet, good luck with your work!" I'm not afraid to work, but I don't have the necessary time because much of it goes into the treatments that have to ensure my existence – a job I consider extra compared to healthy people.
I have never understood why I didn’t deserve to have a normal life, where I could achieve as much as I wanted, color it with the hues I choose, and not flinch every time I look at the calendar reminding me that it's time for medical tests. The biggest lie I heard in childhood wasn’t that if you study well, you'll get far; the biggest lie was that if I take my daily treatments, the disease won’t progress and I will have a normal life. Well, that’s not the case. The disease progresses, and my frustration and anger evolve as well. Because I'm not eligible for the miracle treatment, I often find myself in situations where I don’t know what to do. Although I always find solutions, some situations overwhelm me.
Cystic fibrosis has shown me the true face of many people. If I want to find out who someone really is, I tell them everything about my illness, and their reactions reveal everything. I often wake up with anxiety, and I can't explain why it is so deeply rooted in my mind. If I had to choose, I wouldn’t choose cystic fibrosis and the way I live, in any universe or in any other life. I would choose to be an ordinary person who, until old age, wouldn't know of the existence of this disease. It's fine to be special, but this specialness should be something beautiful – like unique traits, exceptional intelligence, or remarkable talent – not a disease that sets me apart negatively from others and turns me into a vulnerable victim, for mocking people and for the Ministry of Health, which refuses to understand the situation.
It is a pain that, for me, makes no sense and has no purpose – just bad luck and a rigged lottery. Things in the world happen randomly, without logic, explanation, or justice. But we will not remain silent. We will make our voices heard and we will not wait for justice – we will bring it to us, as we can, and we will bring peace to our souls."
Recently, Jasmina received news that restored her hope. Although the innovative treatment with Trikafta was not compatible with her genetic mutations, the Cystic Fibrosis Foundation announced that the medication had been approved for an additional 94 rare mutations, including Jasmina’s. This news brought her tears of joy:
„It’s incredible to know that there is a real chance for me. I am looking forward to this medication becoming available here, so that patients in Moldova can benefit from it too.”
In the spirit of the holidays, we encourage you to look beyond the daily hustle and remember that, alongside us, there may be vulnerable people whose struggles are not always visible. They need not only compassion but also concrete support to be able to live a better life.
Happy Holidays to everyone! 🎄✨