Dragana received an innovative medicine at the state’s expense and became the first woman in Serbia suffering from cystic fibrosis to give birth
Dragana Grubić was among the first to receive the life-saving therapy of “Trikafta” in December 2021, which changed her life for the better, so in 2024, on her birthday, 9 February, she found out that she was pregnant
Today, the world marks Rare Disease Day, and in Serbia at least 16,900 people have been diagnosed and registered with one of these diseases.
Of that number, 930 are on innovative therapies, including Dragana Grubić (35) from Nova Pazova, who a year and a half ago, precisely thanks to the life-saving medicine provided at the state’s expense, became the first woman in our country suffering from cystic fibrosis to give birth to a healthy baby.
"My lungs were not strong"
“I believed! I had faith in God and hope. I did everything for that day, for that feeling, for that opportunity to become a mother. Aleksej is now a year and a half old. Motherhood would not have been possible without ‘Trikafta’, because my lungs were not strong. Aleksej is the first baby in Serbia born while on ‘Trikafta’,” Dragana told Kurir.
Her story shows how much innovative therapies can change the lives of patients with rare and severe genetic diseases.
Dragana was among the first in Serbia to receive the innovative medicine “Trikafta”, in December 2021, just when it arrived in Serbia. At present, 115 patients suffering from cystic fibrosis in our country use this therapy.
“My disease was discovered when I was nine years old – in 2002. It should be detected at birth, but those were different times then. I had frequent lung infections, my mother had had enough and took me to The Mother and Child Institute. They soon established that I had cystic fibrosis,” recalls this brave woman.
The disease began to take its toll
She carried the diagnosis through life with discipline. Several years before giving birth, she was fighting for her life...
“The disease began to take its toll, the lung infections became more and more frequent, my lungs were weakening. My quality of life declined, I was not even in a condition to work. I finished university, my father fell ill and passed away. That entire period was very difficult and all of it affected me. Hospitalisations were frequent, antibiotics began to lose the battle,” Dragana tells us.
The coronavirus epidemic began, and so did the battle for the innovative medicine “Trikafta”, which arrived in Serbia in December 2021:
“The first day I took ‘Trikafta’, it was something incredible, such coughing up of everything, but from that day on I never coughed like that again, as though I had expelled it from myself, as though it had vanished in an instant. Everything was different. I got coronavirus 20 days after first taking ‘Trikafta’, which is otherwise taken in the morning and in the evening. I did not even feel the coronavirus, whether that was because of the medicine or not, no one can know, but I got through it like an ordinary flu.”
She desperately wanted to become a mother
She worked on strengthening her body and organism, and desperately wanted to become pregnant, which, as she says, had always been her goal:
“And so, at the beginning of 2024, I became pregnant. I found that out on my birthday – 9 February. I was not frightened, I stopped reading rubbish on the internet and throughout the whole pregnancy I was calm, serene and brave. I enjoyed my pregnancy, and although I picked up everything that a pregnant woman can pick up, I came through it brilliantly. The cystic fibrosis did not worsen, I was breathing with full lungs.”
In the eighth month of pregnancy she developed high blood pressure and was given therapy. Her waters broke, the amniotic fluid became infected and she gave birth early, four days before entering the ninth month.
“An emergency caesarean followed at five in the morning, I believe I really gave them a hard time, Aleksej was born tiny, weighing 2,200 grams. He was in an incubator for several days, and I recovered quite well. I had no complications, and he was well too, and after seven days we left the hospital,” she concluded.
A great success of the state
Dragana points out that it is a great success of the state that it made this medicine available to those suffering from cystic fibrosis.
“I believe that even a single life saved is a great success of the state. I think it is a great success that today we have individuals who can work, earn a living... We hope that in future there will be more girls who will dare to do it. Our quality of life is now immeasurable,” Dragana said gratefully.