European Stars And Stripes (Newspaper) - November 17, 1987, Darmstadt, Hesse                                Mysterious ailment cause bizarre behaviour by Graham Rockingham United press internationals shortly after his 14th birthday strange things storied happening 1o David Janzen to would be in the Middle of a conversation and suddenly his arms would Jerk uncontrollably into the air. Bizarre noises would Bellow from his Mouth. He found himself cursing loudly at the most inappropriate times. Janzen became shunned by Many of his friends and neighbors in the deeply religious Village of la Crete a mennonite farming Community of some 400 people in the Northwestern Corner of Alberta. It was the kind of town where no one utters obscenities not even under their breath. Janzen stayed at Home hiding in his bedroom 1o avoid Public embarrassment. Maybe 1ho Janzen boy was cursed Townso whispered maybe he was being punished by god Lor some unknown sin they noticed his Sisters and a few other relatives acted a bit strange too. Maybe the whole family was cursed although to did t realize it until four years ago when he turned 39, Janzen and his relatives Sutler irom a neurological disorder known As Tourette syndrome. The mysterious ailment was first discovered by a French doctor Gilles Daia Tourette almost a Century ago. But until 1984 when a handful o . O doctors began focusing on the Jan Zens of la Crete Little was known about in. No one was even sure if it was hereditary most medical experts had considered Tourette syndrome extremely rare affecting perhaps one in every 100,000 americans with easily recognized symptoms characterized by severe and frequent spasms or tics 95 Well As wild Barking noises self destructive impulses and a compulsion to repeatedly yell out vulgar obscenities. But the . Doctors who have tested and interviewed More than 200 of Janzen s relatives now feel the disorder is much More widespread perhaps affecting one in 1,000 people Wilh symptoms ranging from minor obsessions barely noticeable to severe involuntary motions sometimes so Strong that those afflicted cannot even leed themselves. Because of their research Lillic doubt remains about the syndrome s genetic origins. About 30 percent of Janzen s relatives proved to be Tourette s sufferers. David Janzen displayed the worst symptoms at la Crete while the disorder could hardly be noticed in most other diagnosed members of his family. Jinzhen to tit subsided somewhat by his 21st birthday enough for him to marry and snarl a family. Although his arms continued to Jerk with regularly Jenzen no longer made strange noises. He Gol a Job As a farmhand. Local doctors were unable to diagnose his ailment so he travelled to Edmonton 180 Miles to the South of la Crete and was diagnosed As having Huntington s Corea. A fatal and degenerative disease of the nervous system. Janzen was no satisfied with the diagnosis. I wanted to learn More about myself Janzen recalls. I was t satisfied with what they v Ere telling me in Edmonton. I was an through with doctors  he saved his Money and in 1983 arrived at the Mayo clinic in Rochester Minnesota. They referred him to Huntington s specialists at the University of Rochester medical Center in new York stale where his disorder was quickly diagnosed As Tourelle syndrome. When Janzen Lold the doctors Aboul his relatives their interest heightened. I remember the doctor coming into my Hospital room and asking if i could bring my relatives Down so they could see them Loo Janzen now 43, said recently during a break irom his work aboard a Combine Harvester in the wheat Fields of la Crete. They came Back the next Day and asked if in would be All right if they came and visited us in Alberta then we started having a series of family reunions for the  or. Roger Kurlan an assistant professor at Iho University of Rochester says he immediately realized la Crete As on Ideal location to study the Gene  the Janzen family was extensive and it had remained fairly stable Only marrying into local mennonite families making it relatively simple for a related study. Kit Ryan and two Olar doctors Lisl visited Northern Alberta in August 1984, and have returned twice since then As Well As visiting about 90 of Janzen s relatives in Northern Saskatchewan. I think they now know More about my family Han 1 do a lot More Janzen smiles. Medical researchers still searching Lor the causes of Tourelle syndrome Are far off from even thinking about a cure for the mysterious disorder and drug realm enl is the Only proven effective treatment for its motor and phonic symptoms. The most effective and widely used drug is an anti psychotic agent known As Halo Peridot used since the 1960s for Tourelle treatment. Studies have shown As Many As to percent of to patients initially Benefit irom Halo Peridot. But Long term follow  show Only about 20 percent to 30 percent continue use of Halo Peridot for extended periods because of severe Side effects including fatigue weight gain Parkinson an symptoms memory problems anxiety and intellectual dulling. Also used for to treatment is clo Nidine a drug approved by for use in hypertension but recent studies have found in effective in More than 40 percent of to patients. The major Side effect of clo Nidine is sedation which tends to Abate after several weeks. In High doses there May be Low blood pressure and dizziness. Often a Correct diagnosis explaining the reasons behind patients strange behaviour patterns is even More important than treatment. When i was a kid i just cried a lot Janzen recalls. It look a lot of courage Lor me to even Starl talking to  Janzen was aware of what neighbors were saying behind his Back. Unfortunately to ended to believe them i got to thinking a to about the chef we had been cursed. I often wondered what i had done to be punished for Janzen says. Now i know better during the past few years attitudes at la Crete have Tianyou. This is = i5 have been by a dec Ceplon inn the Community. Few people look twice now when Janzen s arms Jerk out from his Side. People used to say this Guy is strange the Devil s got to be in him because he swears " says John Bueckert principal of the local school. But in the last few years everybody has grown to accept him i Don t hear anyone say bad things about him  Lowell handler a 31 year old photographer and Tourelle s sufferer irom new York has symptoms even More severe than Janzon handler finds in difficult to Complete a sentence without bellowing Forth with a Large sneeze like noise he compulsively grabs and reach for objects. When driving Al High speeds handler says he sometimes gels a Strong urge to slam on the brakes. When it comes on i Don t really feel anything handler says about his attacks. There is no pain in s just losing control. The pain is in having people share at you and say you re or