Fall River family hopes study helps prevent children from getting debilitating disease

HALIFAX – A study taking place at the IWK in Halifax is seeking to find the roots of a debilitating disease.

Michael Morley, 14, of Fall Rivers looks like your average high school student, but there is a battle going on inside his body.

Michael has Crohn’s disease, a condition where inflammation in the digestive tract prevents the body from absorbing nutrients. He was diagnosed about four years ago when he started to “feel horrible”.

“I had frequent cramps. I started breaking out in rashes sometimes,” he said.

“It was painful at times. Sometimes I would get those cramps and they would be pretty bad.”

“He did look a little pale and like he was losing some weight,” said mom Theresa, as she reflected back on the time around his diagnosis.

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Michael, the youngest of six children, changed his diet to keep his disease under control and prevent flare-ups.

He is the only person in his family with Crohn’s disease, and there is no history of it in his extended family.

“I don’t want to use the word devastating but it was hard emotionally for the whole family,” said dad Allen.

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“It was a surprise for all of us. There was no indication prior to the onset that this was coming.”

His parents Theresa and Allen wondered what Michael’s diagnosis meant for their other five children, all girls and none of whom are currently showing any symptoms.

Older sister Claire, 15, said she was,”really worried,” after Michael’s diagnosis.

“I think about it quite a bit, [whether] my sisters and I could develop Crohn’s.”

“There is still a concern there that it could creep into the other girls’ health situation,” said Allen.

Two years ago, the family signed up to be a part of the GEM study, which is taking place in Halifax, as well as other cities across Canada and in Europe.

GEM stands for genetics, the environment and microbial, according to Dr. Anthony Otley, a pediatric gastroenterologist at the IWK.

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Otley said the study, which consists of blood samples, stool samples and a questionnaire, is looking not at the patient with Crohn’s but at his or her siblings and offspring.

“A certain percentage of those healthy siblings and offspring will themselves go on to develop Crohn’s over the period of time we’re doing this study. Some of those will go on to develop Crohn’s disease, many will not. What’s the difference between those two groups?”

Otley said genetics is important in Crohn’s disease, with about 15 per cent of newly diagnosed patients having an affected family member.

He also said what patients eat and what their diets consist of could also play a factor as well as how the body’s immune system interacts with gut bacteria.

The study requires 5,000 participants, but only 3,000 have signed up so far. There are 250 participants from the Maritimes.

Otley said it is still too early to tell which factor is more important in the development of Crohn’s – genes, the environmental or microbials – but he is hopeful scientists will be able to have some answers by the end of the 10-year study.

“If we can understand why in family members it is occurring, and again if it’s in a modifiable factor, we can’t change somebody’s gene, but if there are modifiable factors in the environment, in their gut bacteria, then making those modifications, could we decrease somebody’s risk of ultimately going on to develop Crohn’s disease?” Otley said.

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And that is of some relief to Theresa Morley, as she wonders what the future of her five other children holds.

“They’re being closely watched and if they do display symptoms, we can probably catch them a little bit earlier and see what can be done to help them,” she said.

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