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About four years ago, I received the diagnosis of Huntington's disease while in hospital. This diagnosis came as a blow, and shortly after, my husband left me upon learning that I had the Huntington's gene. I am one of eight siblings, and my older sister also suffered from the disease before her passing.
Currently, I experience significant shaking and require constant care. My carer, Christine, provides essential support, as did my sister’s husband who cared for her in a similar capacity. I also have a niece who has inherited the disease and an older brother who passed away from it. I had another brother named Roy, whom I remember well.
My personal experience with Huntington's disease began when my sister started showing symptoms, and we were unaware of the family history. The diagnosis was confirmed when it was discovered that I, too, had inherited the faulty gene, despite the fact that the doctors initially thought my age might mean I did not carry it. My positive test result came in 2011, and although I was told symptoms might not appear for another five years, it has now been seven years, and I am still symptom-free.
Initially, I was deeply troubled and worried about my two sons. However, as time has passed, my concerns have lessened, largely due to my age. My primary challenge now lies with my sons' well-being. I regularly attend the Huntington's Association Group and have received invaluable support from Alison, the local HD nurse, and David, who runs the Huntington's Society in our area.
Unfortunately, I have not felt adequately supported by my GP. When I sought help for an ear infection and balance issues, my GP bluntly suggested that my symptoms were a sign of Huntington's disease starting, which was quite upsetting. I have encountered similar issues with my sister’s care, where misunderstandings about Huntington’s symptoms led to inappropriate actions. For example, a nurse reported my sister for behaviour typical of Huntington's disease, such as involuntary arm movements, which could have been better understood with proper knowledge of the condition.
My sister’s symptoms began in her mid-fifties with balance issues and difficulty speaking, initially mistaken for dementia. Once diagnosed with Huntington's, her condition rapidly deteriorated. She now cannot hold a conversation or walk and spends most of her time in a wheelchair, occasionally smiling. Witnessing her decline has been heart-breaking.
Living with Huntington's disease involves navigating a complex landscape of personal, familial, and medical challenges. The lack of understanding among some healthcare professionals can add to the difficulties, but support from specialist organisations and care providers is crucial for managing the disease and improving quality of life.
