On June 10, 2015, a press conference inaugurating the Mysterious Pan Tourette campaign, organized on the occasion of the Tourette Syndrome Awareness Week, was held in the gardens of the Warsaw University Library. The meeting was attended by journalists and representatives of state and non-governmental institutions, as well as uniformed services – the Police, City Guard and Border Guard. The event was honored by the presence of experts: prof. extra dr hab. Filip Rybakowski – national consultant in the field of child and adolescent psychiatry; prof. dr hab. n. med. Tomasz Wolańczyk, dr hab. n. med. Anita Bryńska and Dr. Tomasz Srebnicki from the Department of Developmental Age Psychiatry of the Medical University of Warsaw and dr hab. n. med. Piotr Janik from the Department of Neurology of the Medical University of Warsaw.
Professor Wolańczyk explained to the audience what the Tourette syndrome is about. It is associated with the occurrence of motor and vocal tics. Each patient suffering from this ailment is a separate case. The mild form of the syndrome includes tics such as blinking, shrugging, grunting, and coughing. Such people are not negatively perceived by the environment, and the impact of the disease on their lives is negligible. On the other extreme there are patients with very severe symptoms, such as: complex sequences of movements, shouting syllables and words, sometimes obscene – coprolalia and making indecent gestures – copropraxia. ” The data cited by Professor Rybakowski show that this disease affects about 1 per mille of the population – which in Poland amounts to several tens of thousands of people. The professor also introduced the genesis of the disease. A combination of several genes is responsible for the appearance of this disorder. But Tourette’s syndrome can also be acquired – it appears, for example, after an infection with streptococcus. He explained. How is the disease diagnosed? Doctor Janik explained that tics must repeat regularly for a period of at least a year. He also added that symptoms tend to get better with age. “Up to 1 in 100 children show clear symptoms of Tourette’s syndrome. In adults, this number drops as much as fifteen times, ”he said. The development of passion can also contribute to relieving symptoms. A patient who indulges in his favorite, addictive activity shows less severity of symptoms for some time. Said Dr. Srebnicki. Tourette patients are often affected by other disorders as well. This is especially true of the youngest. “For 9 out of 10 children, Tourette’s syndrome is accompanied by other conditions, such as obsessive-compulsive syndromes, ADHD or school skills disorders – dyslexia, dysorthography, dyscalculia.” – added Dr. Bryńska.
Can Tourette’s syndrome be treated? Yes, but you have to remember – as Professor Rybakowski explained – that the treatment is only symptomatic. It does not eliminate the disease, but only alleviates its effects. Dr. Srebnicki talked about psychotherapeutic methods, such as behavioral therapy – where a tic is replaced by another behavior – and teaching patients to cope with the tourette in everyday life. As for pharmacotherapy, it is used only in some patients. “Pharmacological treatment is required in those patients whose symptoms are particularly severe. That’s about 20% of adults. Dr. Janik explained. “Treatment should be undertaken when the patient complains of pain and physical inconvenience related to regular uncontrolled movements, and when tics are particularly burdensome for the environment – for example, touching or even licking other people,” added Dr. Bryńska. Tourette’s syndrome is often more of a social problem than a medical one. Patients complain about the reaction of the environment – their behavior is sometimes misunderstood. That is why it is so important to conduct continuous educational activities, ”added Dr. Srebnicki.
Patients’ representatives themselves – Maciej Soborczyk – President of the Polish Association of Tourette Syndrome and Bartosz Wojtkowski – ambassador of people affected by this disorder also spoke during the conference. 19-year-old Bartosz told about his experiences. “Although I have encountered misunderstanding and even aggression many times because of Tourette, this ailment has also become a source of many anecdotes for me,” he explained, telling some funny stories from his own life. Bartek is very active – he organizes lectures and meetings where he introduces the knowledge of Tourette’s syndrome to students, teachers, students, representatives of uniformed services and others. He develops his passions by co-creating music projects with fellow rappers. Mr. Maciej Soborczyk talked about the activities of the Association. We organize information and educational campaigns, trainings and talks. We publish publications. In addition, we run a helpline, and on our website you can find a complete set of information about Tourette’s syndrome – he concluded. During the conference, film materials prepared on the occasion of the “Mysterious Mr. Tourette” initiative were presented – including a short animation, which as part of the campaign is shown in Warsaw’s public transport.
The Mysterious Mr. Tourette action is one of the steps aimed at contributing to building public awareness of the causes and effects of Tourette’s syndrome. It should be remembered that patients, above all, need acceptance and understanding, because often it is the reaction of the environment that is more of a problem for them than the disease itself. Calmness and positive emotions help to alleviate the symptoms of the disease.
One of the key tasks is to educate teachers and school educators, as well as parents of young patients – so that they can properly support their child and with their reactions not cause an aggravation of his disorders. It is also important to build awareness among parents of other children so that they do not feel fear of their child’s contact with peers suffering from Tourette’s syndrome. An additional, important issue is the training of doctors who relatively rarely encounter this disorder in their clinical practice.
Tourette’s syndrome is an inherited neurological disorder characterized by multiple motor and vocal tics. Usually tics are mild, but in more severe cases the symptom of the disease may be involuntary swearing or making indecent gestures. The name of the disorder comes from the name of the French neurologist and neuropsychiatrist Gilles de la Tourette, who in 1885, during his work at the Salpetriere hospital in Paris, described nine cases of this syndrome.