Huntington’s Disease campaigner gets OBE and says you can fight the condition

Former journalist Charles Sabine received an OBE from the Princess Royal on Wednesday for his work raising awareness about Huntington’s disease.

Charles Sabine with his OBE, awarded by the Princess Royal during an investiture ceremony at Buckingham Palace (Kirsty O’Connor/PA) (PA Wire)

A former war reporter who found out he had tested positive for the gene responsible for Huntington’s Disease in between tours of Iraq, said his doctor was “completely wrong” that there was nothing he could do about his condition, adding: “The problem is finding the time to do it all”.

Emmy-award winning journalist turned campaigner Charles Sabine received an OBE from the Princess Royal on Wednesday for his work raising awareness around Huntington’s Disease (HD), a neurodegenerative illness which claimed the lives of both his brother and father and for which there is currently no cure.

He described receiving the honour at Buckingham Palace as significant for the community and told the PA news agency: “It’s the first time that the words Huntington’s Disease have been used in the citation for an OBE.

“From that point of view, what I stress to everyone in the global HD community is that this is a sign of where we are and how things are changing for all those people who, for so long have been associated with this disease which people think of as some kind of a witchcraft or evil and surrounded it with shame and stigma for centuries.”

Huntington’s Disease is the only disease in the UK for which life insurance companies are allowed to discriminate against them because of that

Charles Sabine

On receiving his test results and the advice given to him by 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: ‘There’s nothing you can do about this disease Charles, just live your life as best you can.’

“And I realised that he was completely wrong, that there’s everything that I can do about the disease, it’s just the problem is finding the time to do it all.”

Mr Sabine added: “I’ve also realised that there is more that people can do about their own condition with these supposedly – well I hate the word incurable because it’s meaningless – but untreatable diseases. That’s what I try and encourage.”

He founded the Hidden No More Foundation to empower patients and families who face Huntington’s Disease, and to continue campaigning against their discrimination.

“Huntington’s Disease is the only disease in the UK for which life insurance companies are allowed to discriminate against them because of that, for example. And that’s just one example of many.”

Mr Sabine said arranging several children with the condition to meet Pope Francis at the Vatican was the proudest moment of his campaigning career.

He said: “When he hugged them on a stage and said on global TV it’s time for this disease to be hidden no more, and that was the pinnacle of my work, and my latter life was that moment.”