"I hide from the sun like a vampire": Due to a rare condition, the girl only goes outside after sunset.

Music teacher Tatyana Ershova from Novosibirsk is fighting a rare disease. The spring sun causes her painful burns, and she only goes outside after sunset. The story of a girl with a rare diagnosis is in the material from KP-Novosibirsk.

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For three years, the girl suffered until a familiar doctor noticed the characteristic rash. Photo: Provided by Tatyana Ershova

ATTRIBUTED EVERYTHING TO STRESS

At 21, Tatyana graduated from a pedagogical college and got a job as a music teacher at a secondary school. She woke up at five in the morning and traveled to her students in Zatulinka, then back. Due to lack of sleep, she became extremely tired, literally collapsing from exhaustion.

- In 2015, my joints started to hurt: knees, elbows, shoulders, and ankles. I didn’t understand what was happening and attributed everything to stress and lack of sleep. A year later, I quit and got a job at a school on Dzerzhinsky Avenue. That same time, I visited a clinic. The therapist prescribed vitamins and suggested I take a break; I changed my diet, went to the spa, had massages, and went on vacation to Sheregesh. But it only got worse: the fatigue didn’t go away, and I developed a constant temperature of 37 degrees, – Tatyana Ershova told KP-Novosibirsk.

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Intense chemotherapy led to joint necrosis, and she had to walk with a cane. Photo: Provided by Tatyana Ershova // Ekaterina KONONETS

The whole of 2017 was spent on doctors; she constantly underwent tests and googled diseases, unable to understand what was happening to her. She visited several private clinics and had X-rays done. Tests showed a decreased white blood cell count, but the clinic told her they didn’t see anything serious; it would pass.

- I could hardly get out of bed. My face was swollen, my knees were like melons, and I couldn’t wear jeans or tights. Shoes also didn’t fit due to swollen feet. I lay with a temperature of 38 degrees, couldn’t eat, and lost weight down to 46 kg. Ulcers appeared on my body. Blood tests again showed low white blood cell levels, and they were extremely low. I didn’t understand anything. When the first spring sun appeared, it burned my skin, right to cracks; it was a nightmare, - the girl said.

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The girl wrote music in the hospital and sang in an Orthodox choir. Photo: Provided by Tatyana Ershova

In despair, she called her mother in Kemerovo. Her parents were shocked; they arrived the same day, saw their daughter, and cried. They started looking for familiar doctors and sent her photos. A specialist from Kuzbass looked at Tatyana and immediately noticed the characteristic butterfly-shaped red rash on her face. The next day, Tatyana was admitted to a hospital in Kemerovo, and tests confirmed the diagnosis from the doctor: "systemic lupus erythematosus."

— The diagnosis is serious and incurable, but for me, it was a relief — as if you had been taking a difficult exam for a long time and finally received the answer. I lived in ignorance for three years, and now I have an understanding of how to live on. It turned out I had an advanced stage; I had let the disease progress. I was prescribed chemotherapy, and for two years, I received heavy medications, which eventually led to toxic hepatitis. Music helped me; I experienced the most intense pain and wrote music, then created compositions from my hospital sketches. I sent them to studios, from large labels to small enthusiasts, but unfortunately, no one wanted to collaborate, — Tatyana told KP-Novosibirsk.

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Tatyana went out only after sunset or wrapped herself against the sun. Photo: Provided by Tatyana Ershova

I DON'T GO OUT UNTIL SUNSET

Gradually, doctors switched her from chemotherapy to gene therapy, which alleviated a third of all her pains and symptoms. However, it was psychologically challenging: the girl’s appearance had changed drastically; the beauty had become a quiet person with a swollen face and an anorexic body. Old acquaintances distanced themselves from Tatyana, and she couldn’t even walk in the park with new friends due to the harmful sun. Only her boyfriend, family, and a college friend supported her.

— My fiancé worked as a clinical psychologist, and he was offered a great job in St. Petersburg, so he left. I followed him, and in St. Petersburg, I began to receive better therapy. Also, in Kemerovo, there is nowhere to hide from the sun; in Novosibirsk, there is shade, but the historic center of St. Petersburg provides real twilight. However, the idea that there is almost no sun in St. Petersburg is a myth. I live like a vampire from a fairy tale — I hate spring and summer; everyone wears T-shirts, while I walk in a coat, sneakers, a scarf, glasses, a medical mask, with an umbrella and gloves. Or I simply don’t leave the house until sunset. Sports are forbidden, dancing and swimming too. Yes, the disease is incurable, I’m only 30 years old, but I live for today, — Tatyana Ershova confessed to KP-Novosibirsk.

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The girl started playing the violin in a rock band and released several albums. Photo: Provided by Tatyana Ershova

According to doctors, systemic lupus erythematosus is a rare autoimmune disease caused by a gene malfunction and can only be inherited. A decrease in immunity due to a cold, infection, or even the general condition of the body, such as stress and lack of sleep, can awaken the dormant disease. Tatyana believes that music greatly helps her in her daily battle against lupus.

- In Kemerovo, I sang in the choir of the Orthodox Church and in amateur choirs; it was amazing. In St. Petersburg, I performed with the violin, and then I was invited to the rock band "Radius," and now I play with them; we perform at celebrations, festivals, and corporate events. Doctors do not provide any forecasts; they just say that my current condition is one of the best options possible for me. I hope my story helps others detect it at early stages and peacefully enter remission, – Tatyana says.