Sudbury woman faces challenge of getting tested for Huntington’s

Since 2009, the number of people going to Genetic Counseling Services at Health Sciences North in Sudbury has increased by about 10 per cent each year.

Genetic counselling in Sudbury on the rise

Genetic Counselling Services at Health Sciences North in Sudbury offers more than 2,000 tests to patients. (Jenifer Norwell/CBC)

Since 2009, the number of people going to genetic counselling services at Health Sciences North in Sudbury has increased by about 10 per cent each year.

The department provides testing to identify genetic and chromosomal differences as those mutations are tied to diseases like breast cancer and Down syndrome.

Valerie Allison has worked in the field of genetic counselling for over 25 years. (Jenifer Norwell/CBC)

The genetic co-ordinator with the department said staff do not make the decision for the individual.

"We provide them with the information," Valerie Allison said.

"We hope that after receiving that information that they can make the choice that they are comfortable with."

Allison has been working in the department for more than 25 years, and said she’s seen an increase in people coming to get tested.

"With the media, there’s more out there about genetics and what is available to individuals," she said.

'I did get the dreaded result'

Each year, 700 new patients from Sudbury and the surrounding areas access genetic counselling, including Maureen Berube.

She said it took her 12 years to decide to get tested for Huntington’s disease.

"I really felt that it was important that I knew where I was going with my life," she explained.

Maureen Berube was tested and does have the gene for Huntington's Disease. She was not expecting the result as she is in her late 40 and still healthy. (Jenifer Norwell/CBC)

She said she wanted to finally tell her children that they had nothing to worry about, but she did test positive for the gene, meaning she will be affected by the degenerative disease that will cripple her body and affect her mind.

"I really was nervous but thinking that I was not going to get that dreaded result," she said. "And I did get the dreaded result."

But now that she knows her fate, she’s making healthier choices, hoping to delay the disease for as long as possible.

Stay tuned to CBC Radio One in Sudbury and northeastern Ontario all this week for more on this story. Our series "En(gene)ered" will air on Morning North and Points North, as well as on our local newscasts.