Belarus

Belarus has an estimated number of 10,000 people with MS, many of whom live in shocking conditions of isolation. By comparison to other European countries, the negative impact of health and social policies is most evident in Belarus.

Overall conditions for access to treatment and services are unfavourable. Extremely low per capita income plays an important role as MS patients cannot afford the costly disease-modifying drugs. This is reflected in more advanced disability at younger ages than in other countries. Few people with MS are able to keep their employment, so there is a very low number of full-time employment and only a slightly higher figure for working part-time.

The general outcome of this situation is a poor quality of life for people with MS.

EMSP’s MS Barometer offers additional country insights. It also shows that access to treatment, therapies and employment varies greatly across Europe (MS BAROMETER)

Belarusian MS Society

7, Rue de la Fontaine - 1332 Genval BELGIUM
Tel : +32 495 168588 | Fax : +375 172 228 4194 | Email: olgab@skynet.be

  • "The team’s initial ideas on what MS was about and how to document it collided with the harsh reality I found in Belarus. With this reality in mind, I documented the daily challenges of Andrei Boykatyi, Joulia Chizhenskaya and Nikolai Kleshchanka. I also visited 20 other people affected by MS. All suffered the same isolation. For some of them, the only links with the outside world were a TV, a telephone and, rarely, the internet.

    We managed to establish a close contact and I was impressed by the positive attitude of the people I documented. Andrei was doing Qigong exercises. Nikolai, although blind and paralyzed because of MS, was spending hours in front of the TV with his wife, Alena. Her great love for Nikolai means that she has spent the last 10 years giving him the 24/7 care he so much needs.

    There is a potential to improve the lives of these people. Changes can be as simple as providing walking sticks or wheelchairs to allow them to get out of their apartments and adapting the elevators for their restricted mobility. But there is also a need for rehabilitation centers and access to drugs that can alter the course of the disease."  

    Walter Astrada

    • Minsk, Belarus, 10/2011 • In the one-room flat he shares with his mother, Andrei Boukatyi (34) practices Qigong every morning to build his strength and improve his balance. He chose this alternative therapy after prescribed MS medications caused him periods of depression and aggression. Yet his advanced condition makes it almost impossible for him to navigate the stairs in his building. Andrei’s disability pension, based on years of study (3) and work (3), is about 50 euros per month; his rent costs about 2
    • Minsk, Belarus, 10/2011 • Andrei Boukatyi celebrates personal achievements on a scale relevant to his condition. Three years ago, he was unable to stand for more than one or two minutes. He credits daily practice of Qigong with building his strength and balance. He can now stand for 30 minutes – long enough to wash the dishes, as long as he props his head against the cupboard. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Once his daily exercises are complete, Andrei Boukatyi settles on the sofa to watch TV. He lives on the 3rd floor of a Soviet-style apartment block with no elevator. He is too unsteady to navigate the stairs and go outdoors. Aged 34, Andrei has been inside the flat for most of the past decade: he has little sense of the life beyond what he sees on TV. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Andrei Boukatyi’s crutch rests by the front door. He prefers not to use it inside the flat but poor balance and leg problems make his movements erratic. He “lurches” more than he walks, and stays close to the wall, chairs and tables so he prevent falling. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • The Belorusian MS Society estimates that 500 people with MS live in the capital city – and that 430 are trapped in their apartments. Many of the massive, Soviet-style apartment blocks have no elevator at all, or elevators too narrow to accommodate a wheelchair. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Even when alone, Alena Kleshchanka (51) watches the clock closely. Every 15 minutes, she stops what she is doing to go to her husband, Nicolai. Blind and paralysed from the neck down, Nicolai relies on Alena for everything – including small adjustments to his sitting position to avoid pressure sores on his body. Alena never leaves the flat for more than three hours. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Alena Kleshchanka (51) has spent most of the past seven years organising her days around Nicolai’s needs. Blind and virtually paralysed from the neck down, Nicolai is mentally sharp. While the physical burden of care is heavy for Alena, the couple continue to share a loving relationship. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Nicolai Kleshchanka (56) is blind and virtually paralysed from the neck down, but MS has had no effect on his mental capacities. Extremely low access to medical treatment and rehabilitation has likely contributed to his physical deterioration. The MS Society of Belarus estimates that 500 PwMS live in Minsk – and that 430 are too disabled to leave their flats. Like Nicolai, they pass their days (and years) in front of the TV. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Stairs to the entrance of a Soviet-style apartment block. These buildings either have no elevator, or elevators too narrow to accommodate a wheelchair. The Belorusian MS Society estimates that 500 PwMS live in the capital city – and that 430 are trapped in their apartments. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Svietlana Haurylenka (45) is one of an estimated 430 PwMS from Minsk who rarely leave their apartments. Most spend many hours every day watching TV. Very few have personal computers and so little opportunity to interact online or to access information about their condition. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Soviet-style apartment blocks either have no elevator at all, or elevators too narrow to accommodate a wheelchair. The Belorusian MS Society estimates that 500 PwMS live in the capital city – and that 430 are trapped in their apartments. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Aliaksandr Mijailovich (48) lives with his mother, who is stooped with age and needs a cane. He is one of an estimated 430 PwMS from Minsk who rarely leave their apartments. Most spend many hours every day watching TV. Very few have personal computers and so little opportunity to interact online or to access information about their condition. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Before moving into social housing, Anzhalika Zaiko (43) lived with her mother and teenage daughter. As her disability advanced, all three agreed the situation was too hard for the old and the young. Like the vast majority of PwMS in Minsk, Anzhalika spend hours every day watching TV. Credit: Walter Astrada
    • Molodechno, Belarus, 10/2011 • Andrei Holeyko (47), talks on the phone while watching TV, as his cat passes over his stationary bike, inside his house in Molodechno, Belarus. Andrei got divorced after being diagnosed, at the age of 38. He currently lives with his second wife, Natasha (52), who also has MS. He spends his time watching TV and writing poems. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • Stairs to the entrance of a Soviet-style apartment block. These buildings either have no elevator, or elevators too narrow to accommodate a wheelchair. The Belorusian MS Society estimates that 500 PwMS live in the capital city – and that 430 are trapped in their apartments. Credit: Walter Astrada
    • Slutsk, Belarus, 10/2011 • Joulia Chizhevskaya (27), confined to a wheelchair, has a little boy. They live in Minsk. Joulia was diagnosed with MS when she was 18 years old, but she still decided to have a child. Her son is one a half years old. Currently she lives three months with her parents, who take care of her son, and three months with her grandmother. Credit: Walter Astrada
    • 10/2011, Slutsk, Belarus • Valentina Paleskij (72) carries to bed her granddaughter Joulia Chizhevskaya (27), who is confined to a wheelchair. Joulia was diagnosed with MS when she was 18 years old, but she still decided to have a child. Her son is one a half years old. Currently she lives three months with her parents, who take care of her son, and three months with her grandmother. Credit: Walter Astrada
    • Slutsk, Belarus, 10/2011 • Joulia Chizhenskaya (27) watches TV inside her room at her grandmother's house.Joulia was diagnosed with MS when she was 18 years old, but she still decided to have a child. Her son is one a half years old. Currently she lives three months with her parents, who take care of her son, and three months with her grandmother. Credit: Walter Astrada
    • Slutsk, Belarus, 10/2011 • Kolya (2) gives tea to his mother Joulia Chizhevskaya (27). Confined to a wheelchair, Joulia has little choice but to live at home and let her parents take the major role in raising her only child. Credit: Walter Astrada
    • Minsk, Belarus, 10/2011 • A boy runs past an outdoor staircase in central Minsk. Lack of elevators keeps most PwMS trapped in their apartments. But even if they could get out, they would find it very hard to move around the city. Almost no effort is made to integrate people with disabilities into society. Credit: Walter Astrada
    Photographer:
    Walter Astrada

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