Aleksandar, who suffers from cystic fibrosis, said from the Macedonian top: We all have the right to a cure, we all have the right to life
Alexander Josifoski is a 17-year-old high school student from Tetovo who has been living with cystic fibrosis since he was eight months old. It is a multisystem genetic disease that occurs due to a defect in the CFTR protein, which affects the lungs, pancreas, and other organs.
Alexander's parents have been fighting since the moment their child's illness was diagnosed. Physical therapies, 3-5 inhalations a day, 40 tablets a day, antibiotics every three months, hospitalizations lasting two or more weeks.
"Every parent, when it comes to the health and life of their child, will fight with everything that stands in their way. The psychological pain is greater than the physical fatigue of having a child with CF. When the child asks you why I have to take so many pills a day, why I have to sit with a mask on my mouth and nose 5 times a day because of the inhalation, and when they will let us go home after a long, painful hospitalization? All this causes pain in the soul of parents. The introduction of the drug Trikafta, which is not available in our country, will mean saving many lives in this country," says Mirjana Josifoska, Alexander's mother.
Alexander is now an adult and everything is known about his diagnosis. He communicates almost daily with children from other countries who have the same diagnosis, from whom he hears how much easier their lives are with the modular therapy called Trikafta, a drug that is not available in our country.
This medicine works exactly at the places where the disease manifests itself, that is, it corrects the chlorine channels and improves their function, so that the patient gradually loses the symptoms of the disease, partially or completely.
Alexander is physically active, plays football, hikes. He climbed many peaks in Macedonia with his parents and the "Tetex" mountaineering club from Tetovo, including Titov Vrv, Ljuboten, and the most significant for him is the ascent of the highest peak Korab, where he and his mother proudly unfurled the flag of the Cystical Association Fibrosis, sending a message to the authorities to provide the necessary therapy.
"His ambitions and plans for the future in life are to climb peaks outside our country, but he and the other 130 CF fighters in Macedonia have a common goal, and that is the "peak of their health" called Trikafta", emphasized Mirjana Josifoska, Alexander's mother .
People with cystic fibrosis in Macedonia held a peaceful protest in front of the Ministry of Health a month ago, demanding the introduction of modulatory therapy for all patients.
Fiki Gaspar, one of the patients who has cystic fibrosis, emphasized at the protest that the goal is to let the authorities and the people who are responsible for this condition know that they have a cure, that cure is within reach and depends on them. It should be brought to them and thereby enable them the right to fight and survive.