Actual requests from children with cystic fibrosis (cystic fibrosis)
Competition entries "movement = life!"
This program is designed to help children and adults diagnosed with cystic fibrosis. It is they who are called MuViks in the narrow environment of those who are associated with them.
Their lives depend on our help. In more developed countries such as Germany, France, the United States of America, patients with this diagnosis live 35-40 years longer. This depressing statistic depends on the following factors:
• Systematic outpatient and inpatient treatment - financial opportunity to purchase drugs, availability of modern drugs in the country.
• Availability of highly qualified specialists and laboratories - genetics, pulmonologists, physiotherapists, gastroenterologists, cardiologists, transplantologists.
• Modern treatment and rehabilitation centers, which can provide the necessary assistance, which are equipped with the necessary diagnostic and physiotherapy equipment.
• Presence/absence of lung and heart transplantation, as well as their complex.
People with this diagnosis require daily intake of vital, expensive medications, additional specialized nutrition. They also need specialized medical equipment to measure the oxygen level in the blood (pulse oximeter), to increase the oxygen level when it decreases (oxygen concentrator), a nebulizer to carry out inhalations several times a day, a sterilizer, and also in breathing simulators.
Living with a genetic disorder called cystic fibrosis differs significantly from ordinary life. People with this diagnosis have their own specific daily routine.
Waking up early - for a number of morning procedures (inhalation, exercise for coughing up after waking up, taking medications). Before each meal - count the number of tablets for digestion (minimum - 4, maximum - 12 capsules). After, throughout the day, difficult coughing, for which our wards are looking for secluded places - so as not to cause a lot of ridiculous and uncomfortable questions. In the evening they will have to take antibiotics, vitamins and inhalation again. Night, depending on the severity of the disease - either under the hum of an oxygen concentrator and with tubes from it in the nose, or sleep with breaks for coughing.
The severity of the wards depends on the form of the course of the disease and on the age. The older MuVik, the more complex the form of the course, the more drugs and procedures are daily.
The list of drugs for daily use for all MuViks is similar: Creon, Colomycin, Pulmozyme, Fluimucil, Ursofalk, Lorde, Berodual, Enap, Bifiform, Chophytol, ACC, antibiotics to which sensitivity has been identified, multivitamins. Sometimes children with this diagnosis are shown specialized nutrition - in cases where body weight is not enough to fight the disease.
On average, families with MuVik spend about UAH 8,000-12,000 on medicines per month. The question of how such a child or adult can survive in a middle-income family remains open. We, the employees of the foundation, understand that they cannot cope on their own!
Cystic fibrosis is a serious genetic disease that cannot be cured at the moment. It affects all organs, especially the lungs and the digestive system. The body lacks enzymes that help thin mucus. Due to the large amount of sputum (mucus) in the lungs, various pathogenic bacteria such as staphylococcus and Pseudomonas aeruginosa actively multiply. As a result, there are frequent rises in temperature, constant coughing, shortness of breath, heart and liver suffer. In order to somehow improve and stabilize the state of the body, it is necessary to constantly take medications. Tablets, inhalations, droppers, injections, physical and breathing exercises are the companions in the life of Moviks.
On the base pulmonary department of the Zaporozhye Regional Clinical Children's Hospital is functioning Cystic Fibrosis Center (MV).
Children with this diagnosis are the main "headache" of the department. Cystic fibrosis is incurable, therefore patients need active and continuous therapy throughout their lives. But, unfortunately, it is designed only for children. Adult Musicians in Zaporozhye have nowhere to go. In city hospitals, they don't even have the slightest idea how to treat such a patient.
We are also gradually expanding the "boundaries" of our assistance. Today we have made a decision to help difficult wards from Zaporozhye, Dnepropetrovsk, Kharkov, Lugansk, Donetsk. Patients over 18 years old - from all over Ukraine. We really hope that you, our faithful friends and assistants, will support us in this difficult task!
