This work of art is named «Steps of Life» and presents a child diagnosed with cystic fibrosis (CF) who holds an oxygen tube, carries a huge backpack filled with medicines, and persistently and boldly climbs the steps of life. Every step—every year he has lived—relies upon numerous medicines (there are also packages of medicines inside the steps), which prolong the life of this little person. To move on, that is, to live, he needs care and support from society and the state, which will allow him to build new steps. Raising awareness of cystic fibrosis among the general public and healthcare professionals, and the continuous provision of appropriate treatment and necessary medical care, play a key role in the lives of people diagnosed with this rare disease.
This art object is a continuation of an information campaign aimed at raising public awareness of cystic fibrosis and drawing attention to the unresolved issues of patients with this disease.
A young artist-sculptor Taras Zheltyshev is the author of the concept of the «Steps of Life» exhibit.
«Art is only relevant when it speaks loudly, screams about contemporary issues. If we succeed in using such works of art to draw the attention of the state and the public to the problems of people diagnosed with cystic fibrosis, even to change something for them, it means that everything worked out,» says Taras, the creator of the art object.
The creation of this objet d’art was also supported by patient organizations helping people with cystic fibrosis. People from different cities of Russia who are diagnosed with cystic fibrosis sent packaging for medicines that were used as part of this work of art.
«For a person diagnosed with cystic fibrosis, the first aid kit can occupy a whole cabinet and an entire shelf in a fridge. Medicines become a part of life that a person is not free to give up, for their life depends on them,» says Olga Pylaeva, executive director of the Ostrova Charitable Foundation, «When the idea came up to create this art object to show how much the life of people with cystic fibrosis depends on medicines, many responded readily. We hope that this project will allow us to tell more about the needs and subtle aspects of life associated with this rare disease.»
According to experts, the incidence of orphan diseases in Russia can be about 2%, of which the most common is cystic fibrosis.[1]
«According to the Inter-Regional Public Organization «Support of Patients with Cystic Fibrosis,» in Russia, there are about 4,000 CF patients, of which only 1/4 are adults. People with cystic fibrosis look normal with proper therapy, those around them often don’t even know about their diagnosis, but when a child is diagnosed with CF it affects the way of life of the whole family. For example, to go to school or kindergarten, a child with CF needs to get up early, do several inhalations, do special exercises to clear the airways, and take medications. These children even need to eat more than an ordinary child,» says Irina Vladimirovna Myasnikova, Chair of the Board of IRPO «Support of Patients with Cystic Fibrosis,» «If a relapse occurs, then the number of procedures increases by many times and intravenous antibiotics are added. The situation doesn’t get any easier when a little CF patient becomes an adult. In general, assistance to them is poorly organized in most regions. Despite everything, CF patients have a strong desire to live – they study, work, create families, and give birth to healthy children. But they need support: help from specialists, social assistance, understanding from the people around them. They need medicines to survive. People with cystic fibrosis and their families are heroes fighting for life every day!»
Cystic fibrosis is not contagious and does not affect mental development, but according to research, every 30th[2] person on Earth carries a defective gene that causes this disease.
«The difficulties faced by people with rare diseases are not plain to see but require close attention and concern from society and the state. The life of people with cystic fibrosis largely depends on the current approach to therapy and drug provision,» emphasizes Stanislav Bogdanovsky, General Manager of Sanofi Genzyme in the countries of the Eurasian region, «We believe that contemporary art can help foreground such difficult issues as the lives of people with a rare diagnosis of cystic fibrosis, highlighting the importance of this discussion in the public context.»
The art object is available for visiting and viewing from July 6 to August 6, 2021, at the address: 26 Prospekt Mira, building 1, Moscow
[1] https://medvestnik.ru/content/medarticles/Podderjka-pacientov-s-redkimi-zabolevaniyami-v-Rossii-god-nadejdy.html
[2] https://www.healthline.com/health/cystic-fibrosis-facts#risk-factors