A mother from Harrow is sharing her family’s experience of Huntington’s disease in hopes of raising awareness about the rare condition.
Huntington’s disease is a genetic disorder that affects the brain, causing progressive damage that leads to physical, cognitive, and emotional changes. It is a rare condition, with only about 1 in 10,000 people affected, and there is currently no cure.
Sharon G, 62, from Harrow, has shared her heartbreaking story with Harrow Online to raise awareness about the condition and support others who may be going through a similar journey.
“Huntington’s disease has turned the world upside down for my family,” Sharon shared. “My son passed away from the disease a few years ago aged just 38, and my daughter, who is in her forties, has also tested positive for the gene and is now symptomatic. Their dad, Ray, carried the gene and died aged 53.”
Sharon recounted how devastating it was to watch her son Robin’s gradual decline from the disease. “By the time he took the gene test, shortly after his 30th birthday, I already knew that the result would be positive. His speech was already becoming slurred, and he wasn’t able to control his movement,” she said.
Sharon retired from her assistant head teacher role in 2017 to care for him, and by 2020 he couldn’t swallow and was admitted to the hospital for tube feeding. “It was even more heart-breaking when Covid hit, and I wasn’t able to visit him for weeks at a time. In May 2020 he passed away, and I was beside myself with grief. I can only take some comfort in the fact that he is now at peace.”
Sharon’s daughter Kerrie Ann is now 44 and living with her husband, managing her symptoms. “I do worry for her, and I know she feels the burden of watching in case her symptoms start to worsen,” Sharon said. “At the moment, we’re so grateful for every day that we have together.”
Sharon also shared that Huntington’s disease is still widely misunderstood. “It’s a very complex disease and needs more awareness. My stepson was a policeman and was often called out when people were reported as being drunk when actually, they had Huntington’s disease,” she said. “I hope by telling my story, it raises awareness and encourages support for others who are going through a similar journey.”
Sharon is supporting the Mindful of Huntington’s campaign, launched by the Huntington’s Disease Association for Huntington’s Disease Awareness Month to raise awareness of the impact that Huntington’s related cognitive impairment has on quality of life.
For more information about the campaign or for Huntington’s disease support and resources, please visit https://www.hda.org.uk/get-involved/campaiging/huntingtons-disease-awareness-month-2023/.