"I asked to convey that she loves you all"

In Spain, 22-year-old journalist Taisiy Sheremet died. She led a blog about life with cystic fibrosis - full of rage and love. And inspired many to the struggle for their rights

A twenty -two -year -old journalist Taisiy Sheremet, who lived with cystic fibrosis, died in Spain. She became known thanks to activism - and her open blog . We tell her story.

“Imagine that you have a bilateral protracted bronchitis all your life, which deforms the lungs”

Taisiya Sheremet was born in 2002 in Sevastopol. It quickly became clear that she had serious health problems: she did not gain weight and often fell into intensive care because of bronchitis and pneumonia. The diagnosis of “cystic fibrosis” was made only in two years.

Cycassocidosis is a genetic disease in which the body produces a lot of viscous mucus. With such a disease, light-and often the organs of the gastrointestinal tract do not work as it should. In people with cystic fibrosis, pneumonia regularly develop.

“Imagine that you have a two -way prolonged bronchitis that deforms the lungs all your life,” Taisiya Sheremet explained in an interview with Mel. “You constantly feel bad, always hurts something, there are problems with the chair, because the food is not absorbed.” With cystic fibrosis, you need to perform special exercises and procedures every day so that the condition does not worsen so quickly. And also take many drugs.

Parents did not tell Taisia ​​about her diagnosis, but at seven she herself looked for the word “cystic fibrosis” on the Internet - and read that they live up to 15 years with this disease. After that, she dreamed of nightmares. She described the terrible horror as incomparable.

Being a citizen of Russia (her father is a citizen of the Russian Federation, and her mother had citizenship of Ukraine and only later received a Russian passport) Sheremet could not receive the necessary treatment in Sevastopol. With her parents, she moved first to St. Petersburg, and then to Moscow.

With age, Taisiya's condition worsened. She followed the recommendations of doctors, but circumstances independent of her intervened. For example, in one ward, patients with cystic fibrosis could lie - and transmit to each other dangerous bacteria with this disease.

After 2014, access to drugs was a serious problem. “I remember when I was 11 years old [in 2013], we could come to the pharmacy and chew the Monema recipe (the antibiotic I need) worth 150 thousand rubles,” said Taisiya Sheremet in a column in Novaya Gazeta. - This was enough for several months, it was not necessary to look for and get it. We received it in our arms and dripped it at home to prevent exacerbations. So it was until 2014. And then Russia headed for import substitution, Federal Law No. 44 was adopted. ”

In an interview with Snob, Taisiya said that since 2014, generics, that is, not original drugs, began to give out people with cystic fibrosis. “Merexide, the Russian name Monem,” explained Sheremet in the same interview. - Once I entered a hospital with a temperature of 39, I began to drip this drug, and nausea and vomiting joined the temperature. Mom took the original drug in some bypass way. After the [shift] “Merxide”, everything went to the original. I do not understand how to be treated with drugs that do not treat you, but on the contrary finished off. ”

Over time, there were more and more problems with drugs - it became difficult to buy in pharmacies even for their money. “It’s not hard for me. I'm angry! - Sheremet said in an interview with the Foundation "Speed ​​Center". - I begins to break anger when I think about it. Anger and powerlessness, and from powerlessness I am angry even more. ”

Taisiya Sheremet tried to draw attention to this problem - and often told reporters about her. “I tell everyone that after taking the generic, my hemoptysis begins,” Sheremet explained “Snob”. - But, as if in response, officials from the Ministry of Health during the next interview say that we have excellent legislation, everything works, and our drugs are no worse than the original ones. This is told to me, which took these drugs. "

"I really wanted to express my very valuable opinion"

In 2016, Sheremet began to conduct Instagram and then telegram channel . “I really wanted to express my very valuable opinion,” she explained . “And it somehow happened that this opinion turned out to be many interestingly.” Now 36 thousand people have been signed on Instagram, more than eight thousand people on a telegram channel. Such popularity on social networks has become the reason for bullying Sheremet at school.

In her blogs, Sheremet told not only about life with cystic fibrosis, but also about feminism, domestic violence and other social problems.

“I’m not sure that I would be interested in politics, feminism, if I were not a MV ,” she said . - I turned out to be just the person who is subject to discrimination, and I constantly stumble about different things as a hole. Sexism! Do not like disabled people! Do not give medicine! She stumbled again and hit. Healthy, white, heterosexual people from a good family do not see all these flaws of society. And it would be strange for me not to be the one who I am now, and not to protect the values ​​that I protect. Therefore, for example, I went to a rally for the adoption of a law on domestic violence. ”

With her parents, Taisiya Sheremet had a difficult relationship - and she also often talked about this on the blog. They treated domestic violence differently (Father Sheremet used it) and LGBTK-loves. Taisiya met with the girls - and when her mother found out about this, she could not understand her daughter’s sexual identity with understanding.

Sheremet emphasized that she was grateful to her parents: they helped her survive, extracted medicines, worked a lot to buy the necessary. Nevertheless, because of the disagreement, the girl really wanted to live separately from them-and to see much less often. For this, Taisiya worked since school, actively led a blog where she sold advertising.

At 18, she moved to Moscow from St. Petersburg, where her family lived then. There, Sheremet received help from several charitable foundations .

Taisiya Sheremet collaborated with the “New Gazeta” and led the podcasts “do not” (about harmful practices like conversion therapy ) and “Login” (about ethics). After the full -scale invasion of Russia to Ukraine, she left for Spain.

"I take on decent risks"

At the end of 2023, Sheremet had to return to Russia for several months due to bureaucratic affairs. Here she had an exacerbation - and Taisiya was in the hospital.

“I picked up something, and the condition began to deteriorate,” said Sheremet “Novaya Gazeta Europe”. - They put me in the hospital, and it all started there. Generics were pricked to me, the pills were also Indian and Russian. There are no normal drugs because of the war in Russia. This thing in a dropper and in analyzes leaves a sediment - this should not be. ”

Returning to Spain, Sheremet also went to the hospital. Local doctors insisted on lung transplantation. Taisiya herself wanted to wait for a medicine that could change the course of the disease in people with its variant of cystic fibrosis. “I have so many plans for a living after Target ,” she told the Novaya Gazeta Europe. - I look at the beautiful stories and I think: I will go on travel too, I will walk around restaurants, eat tasty, swim in the sea. I have [swimming] circle, flamingo. ”

Sheremet's transplantation was considered a bad option for several reasons. This is a difficult operation, which is not everyone transferred, but life expectancy after it can become quite short. Theoretically, she could wait for targeted therapy with transplanted lungs. However, this would not cancel the risk of organ rejection - and the need for re -transplantation and taking drugs that suppress the operation of the immune system.

Sheremet did not refuse the idea of ​​the operation completely, but she believed that it could be postponed. “My chance is not 100%, and I take on decent risks, because I can sharply become so much worse that they simply will not have time to operate on,” she explained.

Over time, her condition worsened very much (including due to mistakes of medical personnel). “Out of the last six months, I spent four in the hospital,” wrote Sheremet on social networks in July 2024. - All these six months I live on the ongoing intravenous antibiotic therapy. In addition, I am now forced to use an oxygen concentrator on an ongoing basis. ”

Since Sheremet could no longer work due to health status, and the costs of accommodation, care assistant and medicine remained large, she announced a fundraiser. In two days she was transferred about four thousand euros. Some people subscribed to regular donations (now on the Patreon and Boosty platforms, Sheremet has almost two thousand such donors).

On February 12, 2025, a message appeared in the social networks of Taisiya that she was in intensive care. February 13 - that she died and "asked to convey that she loves you all."

"Jellyfish"