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Blinking, squinting, shoulder jerking, turning around, jumping, clearing the throat, humming, making noises and yelling…
We experienced some of those tics during childhood or at least, we all saw someone else around who were having them. According to studies, 1 out of 5 children experience one or few tics during childhood. Exaggeration, frequent repetition and continuation of those tics beyond childhood cause serious psycho-social problems for the individual who has them.
Everyone who experiences tics do not have Tourette's Syndrome (TS); motor and vocal tics needs to persist for at least a year in order to be diagnosed with this syndrome.
Tourette Syndrome was first described by French doctor Gilles de la Tourette’s in 1884 as a neurodevelopmental disorder that starts in childhood and causes frequently alternating motor and vocal tics.
In Turkey, there weren't any foundations or organizations for people with Tourette Syndrome as it is not widely known. Last year, medical students and families living with Tourette’s collaborated and founded “Tics and Tourette Syndrome Volunteers of Turkey”– with the guidance of Drs. Yanki Yazgan and Ozlem Cakici.
We talked with the founding members of the platform: Final Year Medical Student Bekir Artukoğlu and Çağdaş İslim who is a law school student with Tourette’s.
The only platform in Turkey
Firstly, Çağdaş İslim, we’d like to get to know you better. How did you decide forming a platform on Tourette syndrome?
I am a student from Bilgi University majoring in Law. Tourette syndrome is a not so uncommon but it is a commonly overlooked syndrome. It significantly impairs one’s both bussiness and educational endeavors.
I am one of the founding members of this platform that works to bring awareness to discrimination and social pressure people with Tourette Syndrome face on a daily basis. We work with the families and friends of these individuals to overcome the challanges and face them together.
As the only Turkish platform working on this subject, we have been active with both academic and social events throughout the year. We also currently co-operate projects with New Jersey Center for Tourette Syndrome& Associated Disorders in United States. I am the representative of the Turkish side of the youth advocacy program.
They thought it was intentional
When did the tics start?
It started when I was around 9-10 years old. My father is a doctor and my mother is a teacher. They didn`t understand me at first. I, for instance, had a tic of bending my lips. They would tell me to just stop doing it because it looked perverted. They would tell me I would be ridiculed for doing that.
After the 7th grade, new tics emerged. Hand movements, neck and shoulders, blinking.. My family was also helpless as there were no doctors in Urfa,where I live, working on this. I remember one psychiatrist in Antep telling me that I had Tourette’s Syndrome, he told me I could have a pretty hard time socializing until I was 18 years of age. Back then I was in a private school with scholarship. My grades plummeted.
Then, I started using medication. I was constantly sleepy, I remember sleeping in the classroom for a good 1-2 years after starting the meds. I havent taken any therapy. My father also has an obsessive character. My mother had been having a really tough time battling cancer during this time period as well. I felt really alone.
People would think that I was mentally ill
How was school and social life?
Due to Tourette’s it was very stressful and hyperactive. There are also obsessions. I constantly tried to keep myself under control but I can’t. That was very tiring. I especially remember this one teacher at middle school who turned the entire year in to hell. I would say “I can’t concentrate during the lesson, may I at least keep quiet and read a book?”, and she’d say “No, why aren’t you studying?”. When I did things that I didn’t like to do my tics would increase. I even had teachers who impersonated and mocked my tics. I was more comfortable at social classes, theater and music. I still hate school.
During high school my Tourette’s didn’t get easier. Other people didn’t know what was wrong with me. I told them “I have tics”, but they thought I had a mental condition or a bad psychology. I spoke with my high school philosophy teacher and he said “Don’t be scared. All the philosophers in the history have gone through such things.” After a while I realized that I can’t receive any help from others so I searched Tourette’s on the web and started reading psychology books. At the age of 18, I stopped using my medication with the approval of my doctor.
Are there presently any effects?
I’m a student at the Bilgi University. Nobody judges one another. Everyone minds their own business. That had comforted me. Also I had discovered my area of interest and made my preference accordingly. I’m a law student. Being occupied with writing and drawing calms me.
I have tics but they exist internally. When I tell my friends they say “Really?”They never notice. Internally they still continue as a recovery of that destruction process. For example I still have tics involving playing with my hands.
"It is important that these individuals are not put under distress for having tics"
Let`s delve into the medical side of things. For that, we turn to final year medical student, Bekir Artukoğlu.
Çagdas is someone who learned to live with the difficulties that come with Tourette's and who achieved great academic success. Tics usually begin at the ages of 6-8. They can be simple or more complex. There is a public misconception that every individual with TS has coprolalia, repetitive use of socially inappropriate words. This is not a common symptom of TS but when an individual does have coprolalia they may repeat a racist word although they are not racist. The inappopriate movement or word that may cross all of our minds suddenly finds itself manifested in people who have Tourette's. This is not the result of a decision making process. It is important to keep this in mind. Tics are not intentional.
Tics reach their highest severity at the ages of 10-12. They have a typical waxing and waning nature. They may cease to exist in early adulthood. However, sometimes tics may be refractory to treatment and continue to cause problems for adults. It is common for remission of tics to occur in early adulthood though, as in Çağdaş`s case.
A crucial component of TS is the accompanying difficulties such as attention deficit, hyperactivity, obsessive-compulsive disorder, disorders of impulse control, aggression and emotional outbursts …
Therefore, we classify Tourette syndrome as a neuro-psychiatric disorder. Meaning, the motor component is neurological however there are also psychiatric issues that may even be more debilitating. Studies point to the fact that accompanying psychiatric disorders have a greater effect on quality of life and academic success. For this reason, in addition to the treatment of tics, it is crucial for these disorders to be treated, as well.
There are various drugs to control tics. However, Turkey’s greatest shortcoming in context of treatment is the lack of behavioral therapies. In the recent years, there has been a surge in practice of behavioral therapies in other countries. Children living with Tourette’s should never be blamed for their tics. It is very important for them not be pressure and questioned as to why they do their tics.
Does Tourette Syndrome qualify as a disability?
This is a very sensitive subject for people with Tourette's and their families. It is possible to qualify for "Disability Benefits" with Tourette's syndrome. The nature of the tics and how they impact the individual's life also play a role to be eligible for disability benefits. When we compare Turkey to other countries in Europe we can see there are some major insufficiencies in the individualized education system in our country, the reason behind this being the lack of knowledge about Tourette Syndrome. That is why our primary mission is to educate the community about Tourette Syndrome.
* Click here for Volunteers for Tics/Tourette Syndrome web site and click here for our facebook page.
