Watch above: Against the odds, a Saskatoon woman shares her story to raise awareness after watching several family members die from Huntington’s disease. Wendy Winiewski reports.
SASKATOON – Huntington’s disease has killed Brenda Wasylow’s grandfather, her mom and all but one of her mom’s four siblings. It has taken her sister and her brother is in the late stages.
“I’m seeing cousins affected now which means their children are at risk as well,” explained Wasylow.
May is Huntington’s disease awareness month. The neurodegenerative genetic disorder affects muscle coordination causing abnormal involuntary writhing movements. It eventually progresses to a decline in mental abilities, affecting speech, facial expressions, and memory.
Many sufferers battle anxiety, depression and aggression.
The disease can lead to seizures. Complications such as pneumonia, heart disease and accidental physical injury shortens life expectancy to approximately 20 years from symptom onset. Symptoms usually appear in people between the ages of 35 and 44.
“It’s like a combination of Parkinson’s, ALS and schizophrenia,” said Wasylow, terming it a devastating disease.
Undiagnosed, Wasylow’s grandfather was placed in a mental hospital. As testing improved, Wasylow’s mother was able to get a diagnosis. Because of the disease, she choked to death at age 62.
If a parent has the genetic mutation, there’s a 50/50 chance their children will test positive. In Wasylow’s family, they’re landing on the wrong side of probability.
“I’d guess we’re running in the 70 per cent positive impact.”
She is gene negative.
“Do you have survivor’s guilt,” she asked rhetorically. “Absolutely I do.”
Wasylow says people with Huntington’s also face genetic discrimination in the workplace.
“For any Canadian that has anything in their gene pool … I mean had your DNA tested and what if you were predisposed to a certain type of cancer, as soon as you have that information employers, insurance companies have access to that and you could be denied on that basis,” said Wasylow.
She adds that, in Canada, there is no federal law to protect against it.
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“We allow our insurance companies and employers to ask for health information,” said Bev Heim-Myers, chair of the Canadian Coalition against Genetic Discrimination.
“In most cases, you’re not insurable,” she explained.
“You cannot get life insurance if Huntington disease is in your family.”
There are some exceptions but people can expect to pay a large premium.
The coalition wants the federal government to make genetic discrimination illegal. So far, there’s been no indication from the government that it plans to take up the issue.
In the meantime, the fight against Huntington’s and its far-reaching branches remain on the shoulders of families.
“My brother never had children, my sister adopted her son so in our family it stops,” explained Wasylow, who said her family cured it the only way that’s currently possible.
She feels there is more hope now than ever though as doctors and researchers continue to make headway.
Saskatoon’s “Walk to Cure Huntington’s” takes place June 6. The walk begins at 9:30 a.m. on the Meewasin trail at the University of Saskatchewan.
A donation to the cause can be made to the Huntington Society of Canada.
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