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‘I cried all the way’: Woman, 43, shares story of how rare young Alzheimer’s has affected her family

PUBLISHED: 06:30 08 March 2020 | UPDATED: 14:09 09 March 2020

Sophie Leggett (centre) with husband Chris (right) and Professor Nick Fox (left) at The National Brain Appeal's fundraising event for Rare Dementia Support. Sophie carries the rare gene mutation that causes young onset Alzheimer�s. Photo: Geoff Shaw.

Sophie Leggett (centre) with husband Chris (right) and Professor Nick Fox (left) at The National Brain Appeal's fundraising event for Rare Dementia Support. Sophie carries the rare gene mutation that causes young onset Alzheimer�s. Photo: Geoff Shaw.

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A woman who knows she has the gene mutation for early onset Alzheimer’s aged just 43 has thanked those who supported her through the “life-changing” experience.

From left to right, actress Joanna David her husband, actor Edward Fox with actress Patricia Hodge at The National Brain Appeal's fundraising event for Rare Dementia Support. Photo: Geoff Shaw.From left to right, actress Joanna David her husband, actor Edward Fox with actress Patricia Hodge at The National Brain Appeal's fundraising event for Rare Dementia Support. Photo: Geoff Shaw.

Sophie Leggett, from Lowestoft, carries a rare gene mutation which causes young onset Alzheimer's, known as familial Alzheimer's disease.

Most people with Alzheimer's develop the disease after 65, but both Mrs Leggett's mother and aunt started to show symptoms of the disease in their early 40s before dying in their 50s.

It was then she became worried about her own likelihood of having the disease and sought out the help of Rare Dementia Support (RDS), a group run by the National Brain Appeal.

"The first time I went to a RDS meeting I cried all the way through," she said, calling the diagnosis "life changing".

Theresa Dauncey (left), chief executive of The National Brain Appeal, with ITV's Richard Arnold at the charity's fundraising event for Rare Dementia Support. Photo: Geoff Shaw.Theresa Dauncey (left), chief executive of The National Brain Appeal, with ITV's Richard Arnold at the charity's fundraising event for Rare Dementia Support. Photo: Geoff Shaw.

Speaking at a fund raising appeal in London on Saturday, February 29, Mrs Leggett said she felt: "an overwhelming feeling hearing people talking about their thoughts, fears and experiences that were so familiar. What they felt, I felt.

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"It was really life changing."

RDS hosted the fund raiser to raise money to expand its groups, and to create the first Rare Dementia Support centre in London.

"Being with people who knew and understood was amazing. Over the years RDS has enabled me to come to terms with what lies ahead for me and my family," Mrs Leggett said. "I don't like to think what my life would be like now without the support of RDS."

Mrs Leggett joined celebrities including actors Patricia Hodge, Edward Fox, Joanna David, ITV presenter Richard Arnold and Classic FM presenter John Suchet at the event which raised £110,000 for RDS.

RDS inform and guide families living with various forms of dementia through support groups and access to specialist researchers from the UCL Dementia Research Centre.

Theresa Dauncey, chief executive of The National Brain Appeal, said: "We are so grateful to everyone who has donated to help us raise £110,000.

"The aim is that everyone affected by a form of rare dementia will have access to specialist support, information and learning, as well as contact with other people with a similar condition."


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