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PARE0004 Important Tuva Children School at the World Arthritis Day
  1. I.A. Bulgakova
  1. Eular Pare, Russian patients rheumatic association “Nadegda”, Moscow, Russian Federation

Abstract

Background Republic of Tuva is one of 87 Russian regions and occupies big territory with low density of the population and consists of 17 municipal regions. And there as in any other regions of the planet in Tuva there are children with rheumatoid arthritis, half of them develop invalidity during the first 10 year of the disease. Due to long distances, financial and transport problems many children lack regular visits to the doctor, and their parents are ignorant of many problems of their ill children.

Objectives In this year on 12 October at World Arthritis Day the regional branch of “Nadezhda” organized an action in the Republic of Tuva aimed at attraction of public attention to the problems of children with rheumatoid arthritis. “Nadezhda” organized a school for ill children and their parents. 20 disabled children with their parents participated in it. Invitation of representatives from far off regionals of the Republic was very important.The aim of organizing this school was to learn children and their parents to live with such diseases, to adapt to such life, to have therapy, self management, relations with physicians, obtaining important information on new drugs.

Methods The school consisted of two parts. One of them for parents of children with rheumatic diseases. Doctors: rheumatologist, gastroenterologist, cardiologist, psychologist made presentations in the form of talk, there were many vitally important questions that were answered. Doctors examined all children and explanations were done to their parents.The second part was festive for children. 30 minutes of physical exercises gave them joy and knowledge. After that there was a contest of pictures “Peace to the world”. Children were given paints, albums, pencils and began to draw. Excursion was organized to the ethnic cultural center “Aldyn-Bulack”. Finally there was individual rewarding of all children by medals in nominations “Most clever”, “Most joyful” “The quickest” and others. All children were happy and joyful and it is the best therapy for them.

Results Results of this event was the increase of the level of information in parents and children on rheumatic diseases, methods of therapy, standard of living, physical and psychological rehabilitation, legal aspects and juridical support. Methodical literature was given out free. The participants of the school will disseminate their new knowledge among other patients with rheumatic diseases. The problems of children with rheumatoid arthritis were show has included storylines at the state and municipal TV channels, which increased the level of knowledge about rheumatic diseases in children. A joined cultural project of Tuva branch of “Nadezhda” and Tuva national museum “Aldan- Maadyr” about issuing children's drawings as wall calendar.

Conclusions This school was aimed at the improving of life quality for patients with rheumatic diseases by way of dissemination of information on the disease, right way of life of patients, contemporary therapeutic methods, psychological and legal support, attraction of attention to the problems facing children-patients and their parents.Children and parents will meet their “colleagues” from far away regions, will take scientific enlightening literature, will retell about the problems and their solving, which were mentioned by the specialists during the school. And vitally important knowledge will be disseminated in far away territories which are difficult to reach for doctors in this remote Siberia republic.

Disclosure of Interest None declared

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