Russian blogger living with rare disease dies at hospital in Spain

Russian blogger and journalist Taisiya Sheremet, who was blogging her experience of living with cystic fibrosis, passed away in a hospital in Spain, Takie Dela publication said.

A support group for the 22-year-old blogger informed journalists of her passing.

"She was not in pain. She did not suffocate. She simply fell asleep," they told the publication.

On Wednesday, February 12, a message was posted on Sheremet’s Telegram channel stating that she had been admitted to intensive care. No further details were provided.

The blogger had spent several months in a Spanish hospital. In an open letter, she wrote that she was trying to hold on until the summer of 2025, when the medication she needed would become available. Sheremet noted that due to a rare mutation, the drugs considered cutting-edge cystic fibrosis therapy did not work for her.

Taisiya Sheremet ran a blog about life with cystic fibrosis, highlighting issues related to treatment and medication supply. She was also a podcast host and collaborated with several publications.

What is cystic fibrosis?

Cystic fibrosis (CF) is a genetic disorder that affects the lungs, digestive system, and other organs. It is caused by mutations in the CFTR gene, leading to thick, sticky mucus buildup in the lungs and pancreas. This results in frequent lung infections, breathing difficulties, and digestive issues. CF is a lifelong condition with no cure, but treatments such as airway clearance therapy, medications, and specialized nutrition help manage symptoms and improve quality of life. Advances in gene-targeted therapies have significantly increased life expectancy for many patients.

Living with cystic fibrosis

Living with cystic fibrosis (CF) is challenging and requires constant medical care, but experiences vary depending on the severity of the condition and access to treatment.

People with CF often spend hours each day on treatments, including inhaled medications, airway clearance techniques (like chest physiotherapy or a vest that helps loosen mucus), and antibiotics to manage lung infections. Many have trouble digesting food due to pancreatic dysfunction, requiring enzyme supplements with every meal. Maintaining a high-calorie diet is crucial to prevent malnutrition. Lung infections can become severe, sometimes requiring IV antibiotics or hospital stays. Even daily activities can be exhausting due to reduced lung function.

• Many with CF rely on strong communities, online support groups, and medical teams to help them navigate their condition.
• While CF was once considered a childhood disease, advances in care have allowed many people to live into adulthood, with some reaching their 40s, 50s, or beyond.
• Despite the challenges, many individuals with CF pursue education, careers, relationships, and passions, adapting their lifestyle to manage their health while striving for a fulfilling life.