#SAFENASTYASLIFE september 13%

My name is Nastya Kirinskaya, I am 23 years old. I have a rare disease – Kearns-Sayre 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 three-chamber cardioverter-defibrillator, 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.