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HSC HD Profile: Nikki

Edited by Matthew Santamaria and Janice Quirt

Nikki’s grandfather is one of seven children. All of them have been affected by Huntington disease (HD) in some capacity.

Huntington disease is a hereditary, neurodegenerative illness with physical, cognitive and emotional symptoms for which there is no cure.

“Our family is not sure which of my grandfather’s parents passed on the gene as both of them passed without having any symptoms that we are aware of,” says Nikki, who lives in BC.

HD causes cells in specific parts of the brain to die. The disease leads to incapacitation and, eventually, death. It is likened to experiencing the symptoms of Alzheimer’s disease, Parkinson’s disease, and schizophrenia all in one disease.

Nikki’s grandfather tested positive for the gene that causes HD. According to Nikki, he started to show symptoms in his late fifties and early sixties.

Two of her grandfather’s brothers passed away due to complications from HD. Her grandfather has eight children, 42 grandchildren, and more than 30 great-grandchildren.

Each child of a parent with HD has a 50/50 chance of inheriting the gene that causes HD.

“We as a family weren’t really aware of what HD was for a long time,” Nikki explains. “There are a lot of us who might have to worry about this disease somewhere down the road.”

In 2018, Nikki decided to get tested.

The decision to undergo genetic testing is a very personal one and many people with a family history of Huntington disease choose not to take the test. Others may want to know whether they will eventually develop symptoms so they can make plans regarding career, financial, insurance, family planning and other life issues. It can take up to several weeks to receive results from the genetic testing center.

In August of 2018, Nikki tested positive for the gene mutation that causes HD.

“I had been preparing myself for a while before I found out but I don’t think you can ever fully be ready,” Nikki explains. “It changes your life. I cried and cried, and still cry sometimes. However, I am also determined to help be a part of finding a cure, so that my family members and I don’t have to deal with this disease!”

Nikki has a message for the HD community.

“Keep fighting. Don’t let HD take more from you than it already has. We are going to fight for a cure, maybe not for us but for our kids and our families!”

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