President of the Cystic Fibrosis Assistance and Solidarity Association (KİFDER) İlknur Görgün, emphasizing that Cystic Fibrosis patients are among the group that will be primarily affected by the Coronavirus, and specifically requested that Cystic Fibrosis patients and their relatives do not go to the hospital unless it is an emergency.
While the coronavirus poses a great threat to the world and Turkey, Cystic Fibrosis Assistance and Solidarity Association (KİFDER) President İlknur Görgün and Pediatric Chest Diseases Specialist Prof. Dr. Bülent Karadağ gave important warnings for Cystic Fibrosis patients and their relatives.
“We aim to raise awareness about rare diseases”
With the unconditional support of GEN in order to raise awareness for school-aged Cystic Fibrosis patients Underlining that they started the “Nadir-X” project, KİFDER President İlknur Görgün said, “With the comic book we will create within the scope of the project, a better understanding of school-aged Cystic Fibrosis patients by their friends, especially in the implementation of their treatment, is supported by their friends. Our primary goal is to ensure that they receive them. With the approval of National Education, we aim to enter the list of books recommended by teachers with our comic book and reach all school-age children and their families. Thus, we will try to raise awareness about both Cystic Fibrosis and rare diseases in children and their families. We think that if we can get our Cystic Fibrosis patients to match their feelings with ‘Salt Child’, our hero in the comic, we can help individuals with Cystic Fibrosis find a better place in society with their differences. Salt Boy is the hero of our comic. But we have a lot of heroes. Our biggest goal is for all of them to make their lives easier and to find a place in society where they can be better and happier.” explained.
Cystic Fibrosis patients are in the group that will be most affected by the coronavirus
Cystic Fibrosis patients, as chronic patients, are actually in the group that will be most affected by the coronavirus. İlknur Görgün, , said, “The problems experienced in Cystic Fibrosis are similar to the problems experienced by coronavirus positive patients. Currently, everyone learns what it means to live with Cystic Fibrosis, either by experiencing or seeing. Cystic Fibrosis patients have flu. or when they have a respiratory disease, they need to be hospitalized during the treatment process. Because the disease takes a long time to pass due to the sputum formed. Therefore, the coronavirus is a great risk for our patients. Therefore, it is very important for Cystic Fibrosis patients and their families to comply with the specified precautions. Unless it is urgent in this process We tell them not to go to the hospital A flare-up process If it happens, it should be considered that there is a possibility of hospitalization and they should pay maximum attention to themselves in order not to experience this. First and foremost is nutrition, regular sleep and regular exercise.” said.
Cystic Fibrosis is the most common fatal genetic disease
Cystic Fibrosis is the most common fatal genetic disease in Caucasians. Pediatric Chest Diseases Specialist Prof. Dr. Bülent Karadağ, “It affects the digestive, reproductive and endocrine systems, especially the respiratory system. The cause of the disease is the disruption of the chlorine transport system in the secreting cells. As a result, the secretions, sweat in the bronchial fluids become dense and very salty. While the development of infection is facilitated, enzymes cannot be released in the intestines and fat absorption is impaired.” said
Stating that the first symptoms of the disease are frequent fatty stools, inability to gain weight, persistent cough that does not improve, recurrent bronchiolitis and water losses in the body caused by sweat and salt loss, especially in hot regions. Bülent Karadağ, “As the age of the patients progresses, respiratory symptoms become more pronounced, while weight loss and low weight are noteworthy. Starting from adolescence, diabetes, joint problems, liver damage and infertility can be seen due to pancreatic damage. said.
Expressing that the gold standard for the diagnosis of the disease is genetic analysis. Dr. Karadağ, “However, since it is time consuming and not available in every center, sweat test is generally used instead of genetic analysis in diagnosis. In patients with normal sweat test, if the clinical disease is suggestive, genetic testing is still requested. In order not to miss the diagnosis, in the patient group with disease symptoms Although the results are normal, careful follow-up of the patients and genetic tests should be done.”
Underlining that Cystic Fibrosis is a genetic disease, Pediatric Chest Diseases Specialist Prof. Dr. Bülent Karadağ said, “If the parents have Cystic Fibrosis, their children will be sick. The probability of it happening is 100%. If one of the parents is sick and the other is a carrier, the probability of having the disease in their child is 50%, if one of the parents is completely normal, this probability is 0%. In other words, if a Cystic Fibrosis patient marries a non-carrier, their children do not have the disease.” he said.
Adult patients have to be very careful during the coronavirus process
Referring to what Cystic Fibrosis patients should pay attention to during the coronavirus process, Prof. Dr. Karadağ, “The risk of corona virus in pediatric patients with Cystic Fibrosis is quite low compared to our adult patients. However, our adult patients should fully comply with the isolation, not neglect the use of masks outside, and stay home as much as possible.”
Underlining that the main factor determining the course of the disease is the underlying genetic mutation, Prof. Dr. Bülent Karadağ said, “While patients with some mutations have a more severe course, mild Patients with a mutation may not have any complaints for years. In the normal course, if complaints start from birth and are not diagnosed and treated, patients may die in the first 10 years. If the diagnosis is made early and the treatment is not interrupted, patients can live up to their 50s on average.” he said.
