MS patients seek to explain disease 'cluster' in Ottawa neighbourhood

Jacques Dutrisac, 59, has spent more than two decades living with some nagging questions about his childhood neighbourhood in east Ottawa.

Multiple sclerosis robbed him of the use of his arms and legs years ago. He can no longeruse a computer, writeor even read,but his curiosity is still very much intact.

Dutrisac wants to know why 14 former neighbours all about the same age, all from the small suburban enclaveof Elmvale Acreswere also diagnosed with MS as adults.

"It's amazing, the coincidence. It's alarming, you know. It makes you really, really wonder what was here at that time," said Dutrisac,sitting in a wheelchair outside his childhood home on Plesser Street, near Canterbury Park.

'Mind-boggling'

Dutrisac said three of hischildhood playmates fromPlesser Street were later diagnosed with MS, including Diane Ladouceur.Dutrisac first heard about Ladouceur's diagnosisabout a month after his own in 1991.

"And then a few weeks later,I found out that one of our neighbourswho was a few years younger than us, well she was diagnosed with MS. So I'm saying, 'This is kind of strange,'" said Dutrisac.

It's shocking to discover [Three of us]were all on the same side of the street, two houses away from each other.-DianeLadouceur

"And then, on theparallelstreet right behind us on Saunderson [Drive], another one, our age, we went to elementaryschoolwith her well she's got MS Wow. So I went, 'This is getting ridiculous,this is starting to add up.' Then it doesn't stop there."

"It'smind-boggling," said Ladouceur, now60, who has kept in touch with some of theothers from the group since her own diagnosis.

"It's shocking to discover [Three of us]were all on the same side of the street, two houses away from each other," she said.

List grew to 14

Over the next decade, Dutrisacfound a total of13 former neighbours who had beendiagnosed with MS,allfromwithin a 500-metre radius.A 14th person grew up on Coronation Avenue, closer to Industrial Avenue, about threekilometres away.

"It's just the strangeness, the closeness," he said. "When I could still write, I had decided, this is too much ... so I had started writing all of the names of the people."

Three on Dutrisac'slist grew up onHarding Road, whileothers lived on Saunderson Drive,Haig Drive and Carnegie Street, all nearby.

CBC News has spoken with six of the 14 people on Dutrisac's list. One other from the group died more than 10 years ago, andDutrisac and Ladouceurhavelost touch with some of the others since they first heard about their diagnoses in the1990s.

Ladouceursaid at least seven of the14 graduated fromCharleboisHigh School now St. Patrick's High School in the mid-1970s.

"You start to question, what could it be?Is it theenvironment?" said Ladouceur.

Coincidence, not cluster, group told

ElmvaleAcres was a new suburb whenDutrisac,Ladouceurand the others lived therein the 1960s and '70s, so far from the city core thatthere were cows in thefieldswhere he and his friends used to play, Dutrisac said.

While Dutrisac and Ladouceur have questioned whetherthere might be some common environmental cause, they have no proof, and there's no scientific evidence to backup their suspicion.

Dutrisac and Ladouceursaid they have asked their doctors about it, but havebeen told the 14 cases are likely a coincidence.

"It was always minimized they seemed to downplay it And that bothered me, because you always want an answerWhy could this be?" Ladouceur asked.

Highest MS rate in world

Canada has the highest rate of MS in the world, with an estimated 100,000 people living with the disease,according to the MS Society of Canada.

Dutrisac wondersif the group from Elmvale Acresmay be what the U.S.-basedNationalMultiple Sclerosis Societycalls an "MS cluster."

According to the U.S. society, a cluster is "a very high number of cases" that occur either at a "specific time," or in a "certain area."

Reports of MS clusters do come up periodically around the world, but they are very difficult to proveand usually turn out to be coincidence, according to Dr. Ruth Ann Marrie, an epidemiologist and the director of the MS Clinic at the University of Manitoba.

"It's often very challenging to confirm whether a group of cases really is a true cluster," said Marrie.

In order to determine whether a cluster exists, researchers would need to knowhow many people living in thatarea could reasonably be expected to developMS, a numberknown as"the background risk," she said.

"Unless you have a really accurate understanding of what those background risks are, you can't really evaluate whether this particular group is more than you would expect just dueto chance alone," said Marrie.

Thattype of data currentlyisn't available for many parts of Canada, but Marrie said efforts are underway to improve how Canadian MS patients are tracked.

The Public Health Agency of Canadarecently expanded itschronic disease surveillance systemto include MS, in an effort to "provide an overall picture of the number of MS cases in Canada, allowing us to look at trends over time at the provincial and national levels," according to a statement from the agency.

'There's got to be something here'

Even though apparent clusters are often dismissed as coincidence, Marrie said she thinks they're still worth pursuing because of possible clues, such as genetic risk factors, that might be revealed by studying specific groups of people.

DutrisacandLadouceursaidthey're encouraged by this, and they're hopingsomeone might finally take them up on their offer to research the group fromElmvaleAcres.

It's got tobe more than a coincidence. There's got tobe something here.- Jacques Dutrisac

"We were just kids in a brand new neighbourhood," Dutrisac said. "It's got to be more than a coincidence. There's got to be something here."

Ladouceurwould like to see all the surviving members of the group of 14 get together.

"It would beinteresting one day to just get together and chat about everything,to compare notesand maybe we could learn something from each other," she said.