Flanders today JULY 4, 2012
Erkenningsnummer P708816
#237
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news
f r e e n e w s w e e kly
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business
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tourism
w w w. fla n d e r s t o d ay. e u
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living
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arts
Get out the vote
Limburg libations
Happy Flemish Day
You, too, can vote in local elections in Flanders if you register this month
A whistle-stop tour through the east province’s breweries
We talk to the busiest man on 11 July, Raymond van het Groenewoud
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agenda
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Understanding dystonia A Flemish foundation is shining a light on the painful contortions suffered by people with a littlerecognised movement disorder Andy Furniere
About 10,000 Belgians suffer from the movement disorder dystonia, but almost no one outside of medical circles has ever heard of it. A Flemish patient has joined forces with the VIB, KULeuven, a British expert and photographer Lieve Blancquaert to raise awareness of the condition that has affected her since childhood.
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© Lieve Blancquaert
or 16-year-old Madina, sitting up straight and keeping her eyes open as she does in our cover photo is a rare achievement. She, like thousands of others in Flanders, suffers from dystonia, a condition that means she struggles to control her muscles, to sit upright or to even talk. There are many more like Madina, including Greet Ruelens from Antwerp, who had to search for four years and travel to the US to find a doctor who recognised the neurological movement disorder that was pulling at the muscles in her neck. Although it is estimated that around 10,000 Belgians suffer from dystonia, little or no research into the condition was taking place here. But now the Foundation for Dystonia Research set up by Ruelens and her wife has joined forces with the Flemish Institute for Biotechnology (VIB) and the University of Leuven (KUL) to establish a research lab. And Flemish photographer Lieve Blancquaert has taken a series of portraits of dystonia patients in the hope of raising awareness among medical professionals and the general public. It was as a child that Ruelens, now 53, noticed the first signs of the disorder that was going to affect her later life. “I was seen as a very nervous child because my head often shook uncontrollably,” she recalls. “Stressful situations made this ‘tic’ worse; I remember what a hell it was to sing or to recite a text in front of the class.” Growing up, the symptoms hindered her daily life. “I often knocked over things such as glasses, which made me look very clumsy. Although I followed courses, I could never control my finger movements enough to be able to type. I was also often inexplicably tired.” Through constant practice and willpower, she succeeded in steadying her hand to become a graphic designer. With her wife, designer Lieve Van Gorp, she developed a flourishing fashion label. About 15 years ago, Ruelens’ physical problems increased. “After a normal working day at our label, my neck was terribly stiff, and my whole body was shaking violently – seemingly from exhaustion,” she says. In the following years, the disorder made work impossible. The muscles in her neck started pulling her head back in a painful cramp, until she could no longer sit up straight. ``continued on page 3