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Brynne Stainsby grew up knowing she had a good chance of being diagnosed with Huntington’s disease one day.
Her father has the gene that causes the degenerative brain disorder, so she was born with one-in-two odds of developing it herself. Symptoms of the disease typically appear when people are in their 40s or 50s, which means people at risk of the disease can spend much of their lives wondering whether they will eventually be diagnosed.
While Dr. Stainsby, a Toronto chiropractor, understood the odds and could anticipate the magnitude of the physical and emotional changes a diagnosis could bring, she didn’t realize that simply coming from a family with a history of Huntington’s disease could disqualify her for life or disability insurance. As she was preparing to start her own practice, she learned that it would be extremely difficult, if not impossible, to get covered if she indeed had the genetic variant that causes the disease.
“It was just so crushing and such a crazy realization,” she said. “It was just flat-out discrimination and completely out of my control.”
She...
Her father has the gene that causes the degenerative brain disorder, so she was born with one-in-two odds of developing it herself. Symptoms of the disease typically appear when people are in their 40s or 50s, which means people at risk of the disease can spend much of their lives wondering whether they will eventually be diagnosed.
While Dr. Stainsby, a Toronto chiropractor, understood the odds and could anticipate the magnitude of the physical and emotional changes a diagnosis could bring, she didn’t realize that simply coming from a family with a history of Huntington’s disease could disqualify her for life or disability insurance. As she was preparing to start her own practice, she learned that it would be extremely difficult, if not impossible, to get covered if she indeed had the genetic variant that causes the disease.
“It was just so crushing and such a crazy realization,” she said. “It was just flat-out discrimination and completely out of my control.”
She...