17 June 2014
Kseniya was diagnosed as having cystic fibrosis at the age of 5, when her mother had to run to all kinds of doctors in the attempt to find out why her girl had been coughing all the time and why a little cold might grow into pneumonia. Genetic analysis answered the questions, and then the family had to learn to live with that answer.
It is almost impossible to prevent cystic fibrosis: genetic damage occurs during the development of an embryo. As is known, there is prenatal testing, but it is complicated and dangerous for both the mother and the child. But what average family would think about such things beforehand? Most of us have never heard of cystic fibrosis and of many other genetic disorders. About twenty years ago doctors called cystic fibrosis a fatal disease; now, due to the development of medicine and pharmaceutics, the diagnosis «negatively influences the man’s lifespan and quality of life». Can you feel the difference? Although there is no way to cure cystic fibrosis yet, there are medications that can slow the progression of the disease to such an extent that life expectancy of patients with this diagnosis in Europe has reached 40-50 years. In Russia it is twice as less. The reason is simple: a delayed diagnosis and failure to provide medicines to a patient.
Kseniya did not have proper medication either. Basic therapy of cystic fibrosis includes such drugs as Pulmozyme for the lungs and Creon for digestion. They are to be taken every day. Kseniya is taking Pulmozyme, but she hasn’t seen Creon for eighteen months now. There is no money in the budget, they say. Kseniya needs one pack of Creon per day, it costs almost 500 roubles (10.5 euros). So, in a year, the family should have paid about 200,000 roubles (4,200 euros) for a course of only one basic medicine, but they can’t because they don’t have this money.
From the mother’s letter:
Every day Kseniya is struggling to survive. Her morning begins three hours before school so that she can do two inhalations and respiratory gymnastics. At lunchtime, an inhalation of Pulmozime. In the evening, two inhalations again with respiratory gymnastics in between. To make things worse, my daughter has diabetes, which entails measuring the blood glucose level: before and after meals, before going to bed and after an overnight fast. Counting bread units. Day after day. Sometimes my daughter loses strength, but nobody can run away or hide from the disease, or take a break, and everything returns: inhalations, pills, gymnastics. A patient’s condition during cystic fibrosis totally depends on the constant intake of the necessary medications. With their help a child can feel relatively well and live a full life. We live in the Moscow region, and, strangely, this region is neglected by the Ministry of Health. The most important medicine for cystic fibrosis is Creon 25,000, and the lack of it causes indigestion, the child is losing weight fast. I’m bringing up the child alone, I have no one to ask for help.