There are currently 57 patients who have been diagnosed with Mucoviscidosis, a little-known condition, registered in a dispensary of the Regional Children’s Hospital.
Mucoviscidosis is a common recessive genetic disease caused by gene mutation. The disease causes increased viscous sputum and pancreatic fluid. It results in the disruption of fat assimilation, resulting in an inability to digest food and serious lung problems. Nevertheless, this diagnosis hasn’t become a death sentence for many residents of Zaporizhia – they get university degrees, get married, and even become parents.
A Chance to Grow Up
In Zaporizhia, 3-4 children under two years old get diagnosed yearly with such pathologies. In comparison with other regions, this rate is rather high. Specialists note that this disease is diagnosed in our city much more often than, for instance, in the neighbouring Donetsk region because of its advancements and practical experience. Since 2004, children from the whole region diagnosed with mucoviscidosis have been treated in the Pulmonology Department of the Regional Children’s Hospital. There are 24 regional and 33 young patients from Zaporizhia who are registered in a dispensary. Besides, families from all over the country appeal to be admitted to the Zaporizhia hospital.
The first signs of this disease are: constant cough, breathlessness, inflammation in the lungs and bronchi, and extreme weight loss (due to the digestive disorders). There are often cases of intestinal and lung diseases. If in the past patients could barely live till the age of 15, now thanks to current medical achievements such people can live their lives to the fullest.
“Our society should finally understand that people sick with mucoviscidosis are not a burden. Despite their disability they can work, start their own families and be useful to other people”, says the regional pediatric pulmonary physician Tatiana Okul. “I am shocked when some mothers explain their unwillingness to treat such a child by the fact that he\she will die anyway. First of all, without any medicine and doctors’ aid a child will die a long and agonizing death. Secondly, 14 children who took constant supportive therapy have already managed to enter universities, and one of the patients has already become a mom of two healthy children. Believe me, such cases are really rare even in the international medical practice”.
The Gene Roulette
During my excursion around the department in one of the wards, I met a 12-year-old girl who was getting mucoviscidosis treatment there. Her mom told me that they have to go to Zaporizhia from the Vilnjansk district several times a year. Since each treatment course takes at least a week, the girl has to miss school a lot, so she has to work hard to catch up with her class.
Such children are often born in families where no one ever suffered from such a disease. According to the statistics, every 20th person on the Earth bears a mucoviscidosis gene. Unfortunately, it’s impossible to have a preconception genetic testing in Ukraine. If parents already have a child diagnosed with mucoviscidosis, in case of the next pregnancy a woman ought to take a prenatal screening test. But specialists note that there are asocial families in Zaporizhia who, regardless of the fact that their first child is diagnosed with this disease, keep on having more sick children.
Life Has Its Price
Taking into account the achievements of the Regional Children’s Hospital, there should be a special treatment center built. Due to a long-running renovation, some hospital departments have to be combined, and the Pulmonary Department is no exception. That’s why there are simply no normal treatment conditions for children with mucoviscidosis. Ideally, there should be a psychologist, and in addition, the treatment center should be totally equipped for supportive therapy. Today a plan for creating such a treatment center in Zaporizhia has not even been discussed yet. For the time being the medical staff are glad about their little joy – The Health Care ministry established the centralized purchase of enzymatic drugs program. At the beginning of the year there used to be some problems with the drugs delivery. Unfortunately, the budget does not satisfy the current needs. Natalia Merenkova, the assistant of the head doctor, stresses that the vitally important enzymatic drugs alone cost adult patients 1,500 hryvnyas (187 US dollars) every month. Considering many adults with disabilities suffer from multiple illnesses, they face difficult times since the government doesn’t provide them with free medicine.
