SAFENASTYASLIFE september 13

My name is Nastya Kirinskaya, I am 23 years old. I have a rare disease KearnsSayre syndrome. There are only about 200 people in the world with such a diagnosis. Unfortunately, in Russia there are no standards of treatment for this disease, doctors do not know how to approach it, there are no registered drugs, and I have been put through two unsuccessful surgeries. My mother collected recommendations for my treatment bit by bit from all over the world. When I turned 17 years old, doctors in Moscow ran out of options and suggested waiting for a heart transplant. Then in Germany I received an implant of a complex and rare threechamber cardioverterdefibrillator, which has never before been implanted in Russia. And the work of my heart returned to normal. Later, the device saved my life twice more: after two instances of clinical death, the discharges of the defibrillator started it again. But the battery got discharged, and and only 13 remains now (in September). This will keep me going for about 4 months.