Photo: Maxim Tumanov / TASS
Family members of the Nizhny Novgorod region with Fabry disease ready to treat and “take” them medicine. This was announced by Director of Fund of assistance to patients with rare diseases, “Genome” Elena khvostikova on his page in Facebook.
January 21, patients were willing to provide the drug in Pavlovsk TSRB, but patients are unable to postpone serious plans, and treatment was postponed for a few days to “do nothing in haste,” said hvostikova.
Hvostikova added that he had spoken on the phone with the Vice-Governor of Nizhny Novgorod region Andrei Gneushev. He apologized for the situation with the family and promised that he would personally control everything that happens to patients. He added that he will give instructions to deal in a situation of Sosnowski CRH, which “blackmail offered to patients to sign pre-prepared statements with refusal of treatment instead of the assignment of disability”.
20 January it became known that 52-m to year of life during the treatment is died Mikhail Vorontsov, the uncle of 12-year-old Vanya Lobanov, about whose family, a sick pathology of Fabry wrote “Tape.ru”. According to the official diagnosis the coroner, the man died due to heart failure. He was buried on January 19. Thanks to Mikhail Vorontsov and his doctor learned that the relatives living in the neighbouring villages, sick Fabry.
Earlier “Tape.ru” wrote about the family of the Nizhny Novgorod region, seven members of which, including 12-year-old Vanya Lobanov, has a rare genetic disease. Fabry ill 1 of 120 thousand infants. In this disease in the human body do not produce a certain enzyme, the metabolism and harmful waste products are not excreted and accumulate. The result is the failure of almost all vital systems.
Video, photo All from Russia.