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Description
Tourette Syndrome (TS) is a neurodevelopmental disorder in which there are numerous motor and vocal tics. The specific nature of the disorder, and the poor knowledge of TS lead to exclusion and stigmatization of sufferers. The lack of systemic solutions mean that despite being perfectly capable intellectually, sufferers first as children have difficulties at school, and then as adults they face difficulties in careers and social relationships. The project is intended to help to combat exclusion and mitigate the effects of discrimination against people who have TS and those close to them through improving their knowledge, enhancing skills, activating them to undertake grassroots initiatives and self-advocacy, counselling, and actions that help increase public awareness. We will conduct a series of training sessions on TS, for various groups: sufferers, their parents, people doing medical, psychological, educational personnel work, and volunteers who might encounter sufferers in their work. We will organize a therapeutic and training course for children and young people with TS, and nationwide moderated integration meetings, Weekends with Mr Tourette (Weekend z Panem Tourettem). We will also conduct a nationwide campaign, Tourette in action (Tourette w działaniu), conducted mainly by self-advocates. This will consist of educational and activating activities in the community and psychological support. The measures will be conducted on a nationwide scale in Poland. 74 people (sufferers and persons close to them) will be provided with support and 100 people who may encounter TS in their work will be given training. 10 volunteers will be included in the measures. The partner - the informal, international Group Tic?Tak! will provide support with the expert knowledge by contributing unique knowledge concerning measures taken to help vulnerable people with TS, especially young people.
Summary of project results
The project responds to the problem of social exclusion of people with Tourette Syndrome (TS) and their relatives. The symptoms and specificity of Tourette Syndrome, including numerous motor and vocal tics, as well as the low level of knowledge about TS lead to exclusion and stigmatisation. Tourette Syndrome affects approximately 1% of the population - about 50 000 people in Poland. Lack of systemic solutions, e.g. in the field of education and health care, result in difficulties at school, despite full intellectual functioning, personal and social problems, problems in finding and keeping a job, e.g. being suspected of being under the influence of drugs and wrongly detained by the police. As many as 70% of people with TS feel that they experience exclusion and discrimination. This, in turn, is reflected in the quality of their lives, their beliefs, their attitudes and their assessment of their abilities. As part of the project, a series of informative trainings and seminars entitled ''Tourette''s Knowledge'' were held for various social groups: people with TS, their parents, volunteers, medical, psychological and pedagogical staff who may come into contact with Tourette''s Syndrome in their work. Two integration meetings entitled "Weekend with Mr Tourette" were organised for 124 people. For 2 years, a telephone-call service was held to provide psychological support. The first therapeutic and training camp for 12 children and young people with TS was organised. A smartphone application for monitoring tics was also developed. A nationwide campaign "Tourette in Action" was carried out, implemented mainly by self-advocates, with community-based activities (e.g. in schools). Various materials on Tourette Syndrome were also produced, including two publications and an educational spot. The project benefited people with TS, especially children, their relatives, as well as medical and educational staff from all over Poland. A total of 340 people took part in the activities. Many of them involved self-advocates. People with TS and their relatives received concrete support, psychological and substantive. The project was also inclusive for people with Tourette Syndrome and their families. The support network was successfully strengthened, allowing further involvement of volunteers in community activities, including self-advocacy. The project has undoubtedly raised public awareness of Tourette Syndrome.
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