Lowestoft mum whose family has faulty dementia gene takes part in pioneering trials

Sophie Leggett is set to take part in a dementia trial.PHOTO: Nick Butcher

Sophie Leggett is set to take part in a dementia trial.PHOTO: Nick Butcher - Credit: Nick Butcher

A Lowestoft mum is taking part in a pioneering drug trial in a bid to find a treatment for the hereditary form of dementia that has already claimed several members of her family.

Sophie Leggett is set to take part in a dementia trial.PHOTO: Nick Butcher

Sophie Leggett is set to take part in a dementia trial.PHOTO: Nick Butcher - Credit: Nick Butcher

Sophie Leggett, 39, is taking part in the Washington University medical trial to fight for a different future for her 16-year-old daughter Despina.

Her mum Gillian Ward died of the disease in 2012 aged just 57, her aunt Heather died at 54 in 2004 and her grandad died in his early fifties.

Mrs Leggett, who has a 50:50 chance of having inherited the faulty gene, said: 'It gives me hope. It gives me something positive to focus on.

'There isn't anything positive about my situation.


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'It is feeling like I could be part of something that could change people's lives in the future.'

The international medical trial is expected to continue for a further four years.

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Mrs Leggett's story was featured on the BBC One documentary The Truth About Dementia, presented by Angela Rippon, whose mother battled the disease.

'It is such a huge thing they are looking in to,' said Mrs Leggett. 'If it does any good it won't be in time for me.

'People think dementia is just something that happens when you get older. But it is a disease, like cancer, and look at how treatment for that has progressed.'

Mrs Leggett, who is married to husband Chris and runs a Slimming World class in Gunton Baptist Church, has chosen not to find out if she has the faulty gene, instead preferring to live with a 50% hope she doesn't have it.

She said the symptoms of dementia had started to show when her family members were in their early 40s and she was dreading her 40th birthday this year more than most.

However, she said she wanted to make the most of every day and has created a bucket list, which includes a family trip to New York to celebrate her birthday.

She said: 'As I get closer to that age I am anticipating seeing any symptoms and the more anxious about it I become.

'It is known as hyper-vigilance. Somebody else might lose their keys and not be happy but I stress out much more over it. I think 'Is this the first sign?'.'

The prospect of developing dementia has prompted Mrs Leggett to write a letter to her future carers, telling them about herself. Extracts from the letter were read out in the BBC documentary.

'The person they will meet is not going to be the person I am now,' she said. 'I want them to know who I am and what I am like.'

Mrs Leggett is raising money to help fund the annual Dominantly Inherited Alzheimer's Disease Family Conference.

The conference enables dementia sufferers and their family to meet with others in the same situation along with drug company representatives and other medical experts.

Visit www.gofund.me/tooyoungtoforget to support Mrs Leggett.

Do you have a Lowestoft story? Call reporter Kathryn Bradley on 01502 525829 or email kathryn.bradley@archant.co.uk

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