Huntington’s is rare – only 6,000 people have it in the UK – and there have not been many accounts from the front line. If Patient 1 were simply an illness memoir it would still be powerful. With Raven’s beloved mother, Susan, already dead from a heart condition, there was no one to help untangle the full story. There had always been vague talk of a “schizophrenic” grandmother, but Raven had never made the connection, and Murph was a man who relied on cheerful vagueness to repel direct questions.
Unusually, “Murph”, as they called him, did not develop symptoms until his 60s, 25 years after the first signs of clumsiness and bad temper typically appear. In this unsparing memoir, Raven tells the story of how she came to learn that her father had Huntington’s and, in time, that she too had inherited it. There is no cure and treatment remains essentially palliative – an increasingly heavy cocktail of drugs to baffle the body and dull the terrified brain. Each child born to a parent who has the gene has a 50% chance of inheriting it. This cruellest of neurodegenerative diseases, which takes years to kill but ekes out the indignity by causing you to choke on your food or become aggressive with those you love, is passed down through the generations. C harlotte Raven got to her mid-30s without knowing that her family carried the Huntington’s gene.
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