A genetic error doomed her to a short and suffering life. Theoretically. Because Aneta has cystic fibrosis. And yet he does not wait for compassion, he does not feel sorry for himself. She lives as if nothing had happened – this is her way of dealing with the disease. She plays guitar and djembe, takes photos. It was with the theater that she toured Poland and sang at the Great Orchestra of Christmas Charity.
Paradoxically, it is easier to live with cystic fibrosis when you are a child. Because when a pediatrician releases a young patient from under his wings, the patient faces a harsh reality. People suffering from cystic fibrosis live on average about 40 years, in Poland 10 years shorter. Aneta stood before the Disability Adjudication Committee, she was awarded a disability group, but for a year. It is not known why for 12 months, because cystic fibrosis is incurable. When she wanted to report to the commission a month before the expiry of the benefits, she heard that there were queues and that she could be admitted in six months. And that during this time she will no longer have health insurance. This means that he cannot go to a state clinic or hospital and get prescriptions for reimbursed drugs.
Mutant gen
Cystic fibrosis is caused by a “genetic error” that medicine cannot fix yet. A child inherits an incurable disease from the parents who are its carriers, and most often they are not even aware of it. Cystic fibrosis causes the mucus to thicken abnormally in the bronchi, causing chronic inflammation and obstructing breathing. Doctors say that when you pat a sick baby, the secretion that is spit out is so thick that it falls into the bowl with a loud sound, as if it were a stone. Too thick mucus also clogs the bile ducts, which can lead to cirrhosis of the liver. And digestive enzymes do not reach the intestines, so food is not digested properly. Vitamin absorption is impaired, and the consequence may be osteoporosis even in a seven-year-old child. What happens to the body of this disease is a downward slope. And the psyche suffers no less.
Late diagnosis
Aneta was not diagnosed with cystic fibrosis until she was 14 years old. For a very long time no doctor knew what was wrong with her. As a child, she was often hospitalized with tonsillitis, bronchitis and pneumonia. It was only after a few years that the pulmonologist noticed the high chloride concentration in the sweat. This is the symptom that indicates this disease. – Cystic fibrosis is most often confused with allergy and food intolerance – says Dr. Dorota Sands, specialist in lung diseases and allergology from the Institute of Mother and Child in Warsaw. Its symptoms are chronic and paroxysmal cough, as well as diarrhea. Before an accurate diagnosis is made, children are treated for recurrent bronchial infections or food intolerances. Due to the fact that the disease is rare, it is difficult for doctors to diagnose it. Until recently, diagnosis was made only at the age of 7. Thanks to the introduction of screening tests for newborns, today it is diagnosed earlier. Luckily. Because in this disease time is very important – the sooner a child is diagnosed, the better he has a better and longer life.
The diagnosis changed Aneta’s life. She touched him in all areas. In elementary school, although she was a good student, the teachers, due to frequent absences and incurable disease, suggested to her parents that their daughter would not cope in high school. – I ended up in a confectionery trade – recalls Aneta. Despite frequent stays in the hospital, she became the best student there and collected all possible awards for good academic results. Unfortunately, the confectioner’s paper did not help much. She couldn’t work in this profession anyway – she couldn’t lift anything over three kilograms. This is because it has a so-called venous port. – Frequent intravenous antibiotic therapies destroy my veins, nurses have a problem with inserting a cannula. It happens that multiple punctures do nothing. And if it works, you have to look for another vein after one or two drips. When I have 10 drips a day, there is a problem. And the port gives constant access to venous blood vessels – explains Aneta. Meanwhile, this work requires, among other things. After graduating from school, Aneta decided to continue her studies. She went to evening high school, it was not easy. – My absences aroused my educator’s suspicions. He was convinced that I was playing truant. Even though I came to this school as a Friday student, he said that he would make sure that I got a high school diploma, even if I did well. It broke me so much that I didn’t take my final exams – she recalls.
This is not a school for the sick
Aneta is talented. Versatile. He plays guitar, djembe, sings and photographs. She had the idea that she would set up a post-secondary school for occupational therapy and work with children. When she started school, her disease got worse. She had to go to the hospital for drips. She admitted she had cystic fibrosis. – I heard that this school is for people who want to work with sick children, but not for sick children – he recalls.
She registered as unemployed and was offered an office job. During a visit to an occupational medicine specialist, she was asked if this disease was not contagious. – It is difficult to find a job for someone who often takes time off. No employer is interested in such an employee, he says. She found a kynotherapy school in Bydgoszcz, i.e. therapy with the participation of a trained dog. She bought a cavalier female and they completed their training together. This time she did not admit that she had cystic fibrosis. Although during the classes the lecturer warned that this disease made it impossible to work in this profession, because contact with an animal may expose the sick person to infection. Unfortunately, after graduating from school, Aneta and Nutka did not find a job in Gorzów.
The worst thing is to grow up
There are no adult treatment centers in Poland. Most doctors are unfamiliar with this disease. They heard about her several times while studying. Pediatricians educated on “their patients” cannot treat adults or prescribe medications. Access to modern pharmacotherapy is also a problem. Many drugs in Poland are not reimbursed, and patients who cannot find a job cannot afford to buy them. Patients also lack the possibility of physiotherapy and rehabilitation, not to mention psychological support. – The worst thing is when one of us dies. We have known each other since we were a child and we understand perfectly well, because we went to rehabilitation camps together, we met in the hospital and we have contact with each other – says Aneta. Today, children suffering from cystic fibrosis will not meet because one could infect the other with antibiotic-resistant bacteria. – My passion is music, dance and theater. For the last two years I played in the musical “Alice in Wonderland”. I was a cat. It was a performance staged by the amateur theater Futryna. The artists found their way there after casting auditions all over Poland. We played performances once a month in different parts of the country. Today I miss it – he says. He runs a blog (mukolandia.blog.TvoiLokony) and still plays guitar. In the team from Gorzów. Recent artistic performances? – I sang in the finals of the Great Orchestra of Christmas Charity, and a week ago I played djembe – together with my friends at a music therapy concert in the cultural center in Babimost – he says. When asked about her future plans, she says: – The disease has taught me not to look ahead. I am not able to plan anything because I do not know how I will feel tomorrow. I try to enjoy each day and make the best of it.