A Lowestoft woman, who carries a rare gene mutation that causes young onset Alzheimer's, is set to share her story on national radio this weekend.
Sophie Leggett, 45, is fronting a BBC Radio 4 appeal that will help to raise money and awareness for The National Brain Appeal.
She will highlight her very personal journey of discovering that she carries the gene mutation that means she will develop young onset Alzheimer's, which both her mother and auntie had.
The charity funds a support service for people and their families with rare forms of dementia and Sophie and her family have benefited from the service.
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 early 50s.
At the time Sophie’s cousins feared that it was genetic, but she didn’t want to find out.
Mrs Leggett said: “My daughter was just a toddler.
"I couldn’t bear to think about what it would do to our lives if I found out that this was genetic.”
Many years later, she was persuaded by her cousins to attend a Rare Dementia Support meeting with them, which changed her life.
She said: “The first time I went to a Rare Dementia Support meeting I cried all the way through.
"It was such an overwhelming feeling hearing people talking about their thoughts, fears and experiences that were so familiar, like they were saying my own thoughts out loud.
"Rare Dementia Support has people who can advise and support people like us, something you can’t really find with other dementia organisations.”
Rare Dementia Support provides information and guidance for people, carers and families.
Mrs Leggett said: “I know what lies ahead for me now.
"It’s tough, but thankfully Rare Dementia Support is there to guide me and my family.
"It is a lifeline for the tens of thousands of people across the UK who are affected.
"It’s a service that you are never discharged from.
"And it wouldn’t exist without The National Brain Appeal.”
Mrs Leggett’s appeal will be broadcast on BBC Radio 4 on Sunday, August 1 at 7.50am and 9.25pm and will then be repeated on Thursday, August 5 at 3.25pm.
To find out more about the appeal and to donate please visit nationalbrainappeal.org/Radio4
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