"Esti" Foundation

1. "Esti" Foundation Israeli Tourette Syndrome Association

2. What is Tourette Syndrome? • Tourette Syndrome is a neurological disorder characterized by involuntary sudden tics. • The disorder was discovered by French neurologist • Dr Georges Gilles de la Tourettes.

3. The symptoms of the disorder include: • Vocal & motor tics. • Consecutive vocal & motor tics for more than a year. • A change in the form of the tics and their place & severity. • The symptoms appear before the age of 21.

4. Additional conducts related to the syndrome. • OCD - Obsessive Compulsive Disorder The person has the feeling or need to repeat certain acts. For example, touching an object with one hand and touching it with his second hand in order to "balance" things. Constant checking if the oven is on or not. Children sometimes ask their parents to repeat certain words till they get it the way they want, or erasing their handwriting till they are satisfied with it.

5. ADHD & ADD - Attention Deficit Hyperactivity Disorder & Attention Deficit Disorder These disorders are quite often common among people with Tourettes . 75% of Tourettes patients suffer from these disorders, also. Some people show signs of hyperactive behavior before the Tourettes itself is discovered • Learning & teaching hardships Sometimes people with Tourette Syndrome suffer from one of the following problems: Dyslexia, Miscalculation, hardships or difficulties in transmitting information for memory & organizational in capabilities. It should be noted that despite this common disorder, people with Tourettes have a high level of intelligence.

6. The primary signs The primary frequent signs are rapid eye blinking, mouth distortion, involuntary voices (spitting, clearing the throat or coughing noises, sniffing noises ). They can appear as primary signs alone and in certain incidents can appear together. What causes the symptoms? The reason for this is still unknown. Recent research shows that at least one bad neurotransmitter called Dopamine causes this problem. There is a possibility that additional transmitters are involved in this disorder

7. Is it a genetic disorder? Researchers reveal that Tourette Syndrome is genetic among members of the same family. 50% of the people who have this disorder can pass it on to their kids. The gene can be transformed to other disorders such as simple tics and compulsive behavior without the tics. The gender of the person has a significant influence. The ratio is 4 boys to 1 girl. Only 10 % of those who have the gene will need behavioral treatment. In certain cases, TS is not genetic and comes due to head injuries, problems during pregnancy & birth.

8. How do you diagnose TS? TS is diagnosed by examining the symptoms and checkingtheir history. Doctors cannot examine the disorder through blood tests, x-rays, or other traditional medical checkups or tests. An EEG test is taken in order to negate other neurological disorders. Is there a cure for Tourette Syndrome? Not yet but through appropriate treatment applications, doctors can help to improve patients’ quality of life, considerably.

9. How do you deal with TS? Most people living with TS are not limited by their behavioral symptoms or their tics and they don't need special treatment. When there is a need for medical treatment, it is better to combine it with the appropriate behaviorist and psychological therapy. The well known medicines are: Haleperidol (Halidol), Clonidine( Coloniret) & Orap ( Pimizide). A stimulant medicine like Ritalin or Dexadrine which is given in case of ADHD or ADD can worsen the tics. However, in certain cases they are quite effective helping pupils to function in class and can stop being taken when the situation is stabilized.

10. The medical treatment is very complex .A doctor with broad experience and knowledge of this syndrome, should be consulted. (A list of the doctors can be obtained from the organization). It is very important to follow up on any possible medical side effects till the situation can be stabilized. Psychological consultation & therapy Patients need to be given tools, a support & guidance system (especially when encountering behavior problems) which will enable them to function more easily in their environment and in turn, the environment more readily accept the person with TS. Certain relaxation techniques are effective in lowering pressures and moderating the tics.

11. Alternative medical treatments Among the alternative medical treatments are Shiatsu, Acupuncture, vitamins, herbs, nutrition and bio & neuro-feedback. Also, it is very important to reach reliable experts who are working closely with medical centers. The treatment should be in conjunction with medical supervision.

12. Educational needs for people with Tourettes. The people with TS are intelligent people that have specialeducational needs. Problems arising during their studies are expected. There are many ways to help the Tourette pupil in class. For more information or help on how to deal with it, you can purchase through the organization a pamphlet called " A Guide for Parents & Teachers". You can also contact the representatives of the organization in order to know your rights in the educational systems.

13. The importance of early treatment of TS In some cases the symptoms are obvious and the environment sees this behavior as disturbing, odd and frightening. Usually the tics are the catalyst for social rejection & teasing (classmates, neighbors, teachers, relatives and other people). Even the parents, occasionally, do not know how to handle it. Thus, punishing the child wrongly. This could lead to the child feeling threatened or removed from his family. This act can cause problems in his future interpersonal relationships. These hardships worsen during adolescence and can be very critical in TS kids. In order to avoid emotional & psychological breakdowns it's better to deal with it early. Thus, early examination and diagnoses in these cases is essential. In many instances, you can improve the situation by giving the appropriate treatment to the disorder.

14. The Israeli Tourette Syndrome Association – Goals and Objectives The Israeli Tourette Syndrome Association was established in 1987, by people with Tourettes and their families. • Supportive Services: • Giving guidance to people afflicted with this disorder and how to better handle it. • Collecting information, translating it into Hebrew and dispatching it to its members and professionals (doctors, etc).

15. Issuing periodicals • Organizing meetings for members and organizing professional lectures. • Promoting laws in the parliament that will help to ease members’ lives in cooperation with other organizations. • Applying to the Israeli Army Authorities in order that they will recruit the youngsters who have both, TS accompanied by OCD. Each case has to be dealt with separately. • The organization is doing its best to enter in the "medical basket" in order to help people with TS receive the necessary medicines and have them more readily available to the patient. The organization is aware of the high costs of these medicines.

16. "Open House" – Our meetings are open to everyone once a month in our headquarters in Ra’anana. It's actually a support group for the people with TS and their parents. People can exchange views on how to cope with living with TS. Also, new members can get some tips from older more experienced members in dealing with this syndrome.

17. The "Esti" website As of a year ago, we have a new internet website for the organization where you can find professional information concerning TS, Questions & Answers, Personal stories, essays, etc. The address of our website is: www.esti.org.il