‘She asked to pass along that she loves you all’ Meduza remembers the life of Taisia Sheremet, the 22-year-old journalist who documented her battle with cystic fibrosis and fought discrimination in Russia

Taisia Sheremet has died in Spain after a long battle with cystic fibrosis. The 22-year-old journalist was known for her activism and her blog, where she documented her illness. Meduza looks back at her life.

‘Imagine having lifelong, chronic bilateral bronchitis that deforms your lungs’

Taisia Sheremet was born in 2002 in Sevastopol. It quickly became evident that she had serious health problems: She failed to gain weight and was frequently rushed to intensive care with bronchitis and pneumonia. Doctors reached a diagnosis of cystic fibrosis when she was just two.

Cystic fibrosis is a genetic disorder that causes the body to produce excessive amounts of thick mucus. The disease primarily affects the lungs and often the gastrointestinal system, inhibiting proper functioning. People with cystic fibrosis frequently suffer from pneumonia.

“Imagine having lifelong, chronic bilateral bronchitis that deforms your lungs,” Sheremet explained in an interview with Mel. “You constantly feel bad, something always hurts, and you have trouble going to the bathroom because food isn’t properly absorbed.” Managing cystic fibrosis requires daily exercises and procedures to slow the disease’s progression. Patients also need to take a lot of different medications.

At first, Taisia’s parents didn’t tell her about her diagnosis, but at the age of seven, she googled “cystic fibrosis” and read that people with the disease typically don’t live past fifteen. Nightmares followed. The terror she experienced, Taisia later wrote, was unlike anything she’d known.

As a Russian citizen (her father was a Russian citizen, while her mother, initially a Ukrainian national, later obtained a Russian passport), Sheremet could not get the medical treatment she needed in Sevastopol. She and her parents first moved to St. Petersburg and later to Moscow.

Taisia’s condition worsened with time. She followed doctors’ recommendations, but factors beyond her control complicated her treatment. For example, hospitals often housed people with cystic fibrosis together, where patients could expose each other to dangerous bacteria.

After 2014, access to medication became a major problem. “I remember when I was 11 [in 2013], we could go to the pharmacy and fill a prescription for Meronem (an antibiotic I needed) for 150,000 rubles [roughly $4,700 at the time],” Sheremet wrote in a column for Novaya Gazeta. “That supply would last for several months, and we didn’t have to search for it or struggle to get it. We would get it and administer it at home to prevent flare-ups. That’s how things were until 2014. Then Russia shifted to import substitution […].”

In an interview with Snob Media, Taisia said cystic fibrosis patients in Russia were increasingly prescribed generic medications after 2014. “Merexid is the Russian version of Meronem,” she explained, recalling her brush with the drug. “Once, I was hospitalized with a fever of 39°C [102°F], and they started giving me Merexid. Soon, I had nausea and vomiting, not just a fever. Mom used some loophole and got the non-generic. After switching back to Meronem, everything cleared up. I don’t understand how we’re supposed to be treated with drugs that don’t cure us, that only make things worse.”

Over the years, Russia’s shortages grew more severe, and it became difficult to buy medications even with private funds. “I don’t feel weak — I feel angry!” Sheremet said in an interview with the AIDS Center Foundation. “I feel an overwhelming rage when I think about this. Rage and helplessness — and that helplessness makes me even angrier.”

Taisia Sheremet tried to draw attention to these issues and often raised the subject in interviews with journalists. “I tell everyone that I start coughing up blood after taking a generic drug,” she told Snob. “But Health Ministry officials claim during interviews that [Russia’s healthcare] legislation is excellent, everything works, and our generics are just as good as the brand-name versions. And they say this to me, someone who has actually taken these drugs.”

‘I just had to share my oh-so-important thoughts’

In 2016, Sheremet started an Instagram account and later a Telegram channel. “I just had to share my oh-so-important thoughts,” she joked. “And somehow, it turned out that many people found it interesting.” Today, her Instagram has 36,000 followers, and her Telegram channel has more than 8,000 subscribers. Taisia’s popularity online led to bullying at school.

On social media, Sheremet wrote not only about living with cystic fibrosis but also about feminism, domestic violence, and other social issues.

“I’m not sure I would have become interested in politics or feminism if I weren’t an ‘MV’ [someone with cystic fibrosis],” she said in February 2020. “I ended up being exactly the kind of person who faces discrimination, constantly tripping over things like they were potholes. Sexism! Prejudice against disabled people! No access to medication! Another stumble, another hit. Healthy, white, heterosexual people from good families don’t see these flaws in society. But for me, it would be strange not to be who I am today and not to defend the values I support. That’s why, for example, I went to protests in support of [Russia’s] domestic violence legislation.”

Sheremet had a complicated relationship with her parents, which she often discussed in her blog. For example, they didn’t see eye to eye about domestic violence (her father was abusive) or LGBTQ+ issues. Taisia dated women, and her mother never accepted her daughter’s sexuality. On social media, Taisia emphasized her gratitude for everything her parents had done to keep her alive (securing medications and working long hours to afford it), but the disagreements at home made her want to leave home and see less of her mother and father. To break free, she started working while still in school and monetized her blog by selling advertisements.

At 18, she left her family in St. Petersburg and moved to Moscow, where she received support from several charitable foundations.

Sheremet collaborated with Novaya Gazeta and hosted the podcasts Ne Nado (about harmful practices like conversion therapy) and Vagonetka (about ethics). After Russia’s full-scale invasion of Ukraine, she left for Spain.

‘I’m taking considerable risks’

In late 2023, Sheremet had to return to Russia for several months due to paperwork issues. While there, she suffered a severe health relapse and was hospitalized.

“I caught something, and my condition started worsening,” Sheremet told Novaya Gazeta Europe. “They admitted me to the hospital, and that’s where it all began. They injected me with generics, and they gave me pills that were also Indian and Russian. Because of the war, there are no proper medications in Russia. This stuff in the IV and my lab tests leaves a residue — that shouldn’t be happening.”

After returning to Spain, Sheremet was hospitalized again. The doctors there insisted on a lung transplant, but she wanted to hold out for the end of clinical trials on a new treatment tailored for patients with her specific type of cystic fibrosis. “I have so many plans for life after targeted therapy,” she told Novaya Gazeta Europe. “I watch beautiful Instagram stories and think: I’ll travel too, go to restaurants, eat delicious food, swim in the sea. I have an inflatable flamingo ring.”

For several reasons, Sheremet hesitated about seeking a lung transplant. The complex surgery is sometimes fatal, and the average life expectancy for survivors is short. Theoretically, targeted therapy would be an option even after a transplant, but that wouldn’t eliminate the risk of organ rejection — or the need for another transplant and lifelong immunosuppressants.

Taisia didn’t entirely rule out the surgery but believed it could be postponed. “My chances aren’t 100 percent, and I’m taking considerable risks because my condition could worsen so suddenly that they simply won’t have time to operate,” she explained.

Her health gradually deteriorated even further (partly due to medical errors). “Out of the last six months, I’ve spent four in the hospital,” Sheremet wrote on social media in July 2024. “I’ve been on continuous IV antibiotic therapy for all these months. On top of that, I now have to use an oxygen concentrator at all times.”

With her health preventing her from working and facing the high costs of housing, a caregiver, and medicine, Sheremet launched a crowdfunding effort. In two days, she raised some 4,000 euros (roughly $4,200), securing recurring donations from numerous supporters. Before her death, Sheremet had nearly 2,000 patrons on the crowdfunding platforms Patreon and Boosty.

On February 12, 2025, a message shared on Sheremet’s social media stated that she was in intensive care. The next day, on February 13, her death was announced. “She asked to pass along that she loves you all,” the message read.