Diagnoses of Huntington’s disease have doubled since the 1990s, and experts warn that thousands of Britons may be living with the condition without knowing it.
Research published in the European Journal of Neurology found that between 2000 and 2018, the prevalence of Huntington’s rose from 4.3 cases per 100,000 people to 9.2 per 100,000. A separate 2021 study found cases in Northern Scotland jumped by 50 percent over the last 30 years.
Around 7,000 people in Britain are currently living with Huntington’s, a genetic disorder that destroys nerve cells in the brain and has been described as a combination of dementia, Parkinson’s and motor neurone disease. The condition is incurable, and patients typically live 15 to 20 years after diagnosis. Around one in 10 patients die by suicide.
Better testing, not a true surge
Dr. Daniel van Wamelen, a clinical lecturer in neuroscience at King’s College London, said the rising numbers most likely reflect improved ability to detect the condition rather than a genuine increase in cases. He pointed to the identification of the Huntington’s gene in 1993 as a turning point that made genetic testing far more accessible.
Van Wamelen said that before the gene was discovered, clinicians did not know exactly where it was located, making diagnosis much harder. Since then, he said, it has become straightforward to confirm whether someone carries the mutation.
Fear and stigma keep many undiagnosed
The disease is most commonly inherited. Children of a parent who carries the mutated huntingtin gene, known as HTT, have a 50 percent chance of inheriting it themselves. The condition is typically diagnosed after the age of 30.
Van Wamelen said many people at risk choose not to be tested. He described the decision as deeply personal, noting that some want certainty while others prefer not to know. A 2019 study published in the journal Clinical Genetics found that two-thirds of people who declined testing cited the absence of an effective treatment as their main reason.
Van Wamelen also said stigma plays a role. Huntington’s can cause significant changes in behaviour, including disinhibition and inappropriate conduct, alongside uncontrollable facial movements and jerking. He said people tend not to talk about the disease openly and often keep it hidden, which he described as a problem for broader public awareness.
What the disease looks like
According to the NHS, early symptoms can include difficulty concentrating, memory problems, obsessive behaviours, delusional thoughts and depression or anxiety. As the disease progresses, patients may develop uncontrollable movements, difficulty swallowing and speaking, weight loss, and muscle stiffness. The most common cause of death is complications such as pneumonia.
