A former war correspondent who found out he had tested positive for the gene responsible for Huntington’s disease between tours of Iraq said his doctor was “completely wrong” that there was nothing he could do about his condition, adding added: “The problem is finding him the time to do everything”.
Emmy-winning journalist-turned-activist Charles Sabine received an OBE from the Princess Royal on Wednesday for his work raising awareness of Huntington’s disease (HD), a neurodegenerative disease that affects both his brother and father has taken life and for which there is currently no cure.
Describing the Buckingham Palace tribute as significant for the community, he told the PA news agency: “It is the first time the words Huntington’s disease have been used in a mention of an OBE.
“It is from this vantage point that I stress to everyone in the global HD community that this is a sign of where we are and how things are changing for all those people who have been associated with this disease for so long, from which the People think of it as some kind of witchcraft or evil and have been surrounded with shame and stigma for centuries.”
Upon receiving his test results and the advice of his doctor at the time, he said: “While the neurologist who gave me my test result for my genetic mutation in 2006, while the words he said when he gave me that, he said, ‘It There is nothing you can do about this disease Charles, just live your life the best you can.”
“And I realized that he was completely wrong, that there is everything I can do about the disease, it’s just the problem of finding the time to do everything.”
Mr Sabine added: “It has also become clear to me that people with these supposedly – well, I hate the word incurable because it’s meaningless – but untreatable diseases can do more about their own condition. That is what I try and encourage.”
He founded the Hidden No More Foundation to empower patients and families facing HD and continue to fight discrimination against them.
“Hunttington’s disease is the only disease in the UK where, for example, life insurance companies are allowed to discriminate against it. And that is just one example of many.”
Mr Sabine said arranging several children with the condition of meeting Pope Francis at the Vatican was the proudest moment of his campaign career.
He said: “When he hugged her on a stage and said on global television it was time to stop hiding this disease and that was the pinnacle of my work and my last life was that moment.”