Sunday is European Tourette Day, a day dedicated to Gilles de la Tourette. It is a good thing that that day is there, says neurologist Agnes Wertenbroek. "Many people think that the condition is tantamount to swearing or cursing. But that only applies to 10 percent of patients."
What exactly is Gilles de la Tourette?
"Tourette is estimated to affect up to one in a hundred people. It is a neuropsychiatric condition that often first manifests itself in children between six and eight years old. There are always tics: involuntary movements and sounds. The diagnosis is made when there are both sound and movement tics and if they last longer than a year. "
“Sound tics are, for example, hissing, coughing, growling or sniffing. We call it involuntary tics. You don't want to, but you have to. ” Agnes Wertenbroek, neurologist
So Tourette isn't just about swearing?
"Most people associate Gilles de la Tourette with swearing or cursing. But only 10 percent of patients suffer from it. What is much more common is extreme blinking of the eyes, nose or shoulder twitching, head nodding or making a neck movement. Sound tics are also common. "
"Sound tics are, for example, hissing, coughing, growling or sniffing. We call it involuntary tics. You don't want to, but you have to. In that sense it can be compared to the feeling of wanting to suppress a cough when your throat tickles. That is very difficult. Besides 85 tics, 85 percent of the patients also have other characteristics such as anxiety and compulsive neuroses, ADHD or autism. "
How did Gilles de la Tourette come about?
"We don't know exactly yet. We know that genes play a role, but not exactly which ones. In the deep nuclei in the brain, a mismatch takes place between the brain region that activates the movement and the region that inhibits movement. Also dopamine plays a role. Heeding the impulse makes you feel good. But much more research remains to be done. "
Can it be treated?
"Different treatments are possible. The special thing about Tourette is that it is a neuropsychiatric disorder. You can end up as a patient with the neurologist, the psychologist or the psychiatrist. At best, you will be seen by all three."
"Many patients find that tics worsen with tension that corona brings, and that their cough or sniffing tends to come back or worsen." Agnes Wertenbroek, neurologist
"That is why we opened the Policlinic Gilles de la Tourette at Hospital Group Twente three years ago. We see both children and adults from the three different areas of expertise."
"It depends on the complaints which treatment path is chosen. Tics can often be reduced with the help of behavioral therapy by a psychologist. Or with medication. In severe cases, 'deep brain stimulation', a neurosurgical intervention, can help. Does a patient have more suffer from compulsive or anxiety disorder, then a psychiatric approach is better. "
Does Covid Pandemic Affect Tourette Patients?
"Tourette is very sensitive to stress, but also to triggers. Many patients find that tics worsen due to tension that corona brings, and that their cough or sniffing tends to come back or worsen. This creates new stress, as society is in corona times is extra alert to people who cough. "
Agnes Wertenbroek is a neurologist and head of the Gilles de la Tourette Outpatient Clinic at ZGT (Hospital Group Twente). To learn more about Gilles de la Tourette, see www.tourette.nl.