Laura Sides faced a difficult choice: to learn if she had inherited the gene for the rare form of early-onset dementia that led to her father's diagnosis in his 40s. Her experience, shared on BBC Radio 4's Life Changing podcast, highlights the complex emotional and practical ramifications of such genetic knowledge.
Growing up, Sides felt a strong connection with her father, a general practitioner and a devoted father. When his Alzheimer's symptoms advanced, she left university to care for him, cherishing their remaining time together. After her father's death in 2009, a year after her mother passed away, Sides felt an urge to relocate and eventually settled in Melbourne, Australia.
In 2013, thoughts of inheriting her father's condition began to surface, prompting her to consult a specialist. She was informed that a genetic test could determine with near certainty if she carried the gene, with an expected age of decline between 46 and 48 if positive. At the time, she decided against testing, feeling she was not yet ready to confront that possibility.
As she approached her 30s, Sides's desire to know grew, leading her to undergo six months of genetic counseling. The waiting period for her test results was marked by anxiety. Upon receiving the news, she learned she had inherited the gene. "We're really sorry, it's not good news, and you have inherited the gene," she recalled the doctors telling her.
Initially, the news was met with a sense of disbelief, but the reality soon brought anger and confusion about how to live with such knowledge. Despite this, she participated in medical trials, finding a sense of purpose in contributing to research stemming from her negative situation.
Now 43, Sides is three years away from the predicted age of symptom onset. She lives with the awareness of her genetic predisposition, stating that the possibility of future decline does not keep her up at night. She acknowledges the challenges in forming new relationships, as disclosing her condition has often led to endings.
However, she has also found reassurance and joy in love and acceptance. Sides also made the difficult decision not to have children, deeming it unfair given her genetic inheritance.
For Sides, life is now focused on appreciating the present, spending time with loved ones, and engaging in activities that bring her happiness, such as being outdoors and in water. "It really is actually the little things are the big things," she reflected. She hopes for "a wonderful few years in this world... drinking champagne and eating oysters."