‘I LIVE WITH THE FEAR EVERY DAY’
A mum who is prone to Alzheimer’s disease tells how the illness is like a ticking time bomb
A YOUNG mum geneticallyy prone to Alzheimer’s disease has spoken of her fear r of developing the illness – and passing it onto her children.
Joanne Harrigan discovered she has a 50% risk of developing the illness after her mum Sylvia died in 2012 aged just 59.
“It’s like a ticking time bomb forr me,” the 35-year-old.
“I live with the fear of it every day. Everyone misplaces their car keys but if I do it I have a panic attack.
“If I walk in a room and I can’t remember why, for me it is the end of f the world. I live with that every day.”
Joanne suspected there might be a connection because three of her r mum’s siblings died from the disease as well as her grandfather Gwilym Wallbank.
“The worst part is knowing that I could unknowingly have passed itt onto my children,” the communityy safety warden said.
“When I found it was genetic, that t was the hardest part for my mum, knowing that she had put me at risk.
“She was involved in research and studies and she would say ‘You need to find a cure because I don’t want t my girls to go through this.’”
Joanne’s three kids have all been told about the condition.
“I’m very open with the children, they are 13, 16 and six and we talk k about it a lot,” Joanne said.
“My eldest knows what it means, and we talk about it a lot, and if they y ever want to start a family they can go through treatment.”
By the age of 25, Joanne, from Cefnhengoed, Caerphilly, had written her will.
She changes her mind “every other day” about finding out whether she will get Alzheimer’s – there is a test that can let her know.
“The people closest to me say I shouldn’t because they do not think I would cope well with a negative result, but a positive result would give me my life back,” Joanne said.
“But the scariest part is that my sister might get the disease and she might have to go through it.”
She added: “All the holidays I want to do with my children, we’re not waiting until retirement, we just do it because we are frightened if I get the diagnosis, and was told I was going to get ill, I would not have the strength to still do it.”
She knows “whatever happens” she has a healthy 15 years ahead.
“I’m going to cram as much as possible in that time,” she said.
“Hopefully then there will be enougheno gh good memories to see m my family through the bad times.”
Visits to Florida and Canada are in the pipeline.
Speaking about when she found out about being prone to Alzheimer’s when her mother fell ill, she said it was “like the end of the world.”
“At the time I was having to deal with how ill my mum was becoming and I had to deal with the fact it was not going to end there.”
Joanne was put in touch with the Dementia Research Centre in London’s Russell Square.
They put her in touch with other families who are genetically prone to Alzheimer’s. There are not many of them.th Just 1%% of f sufferersff h have theh f familial strain of the disease.
“Down here in Wales, we still feel alone,” Joanne said.
“I have met about five different families in Britain. There are not many of us.”
Since diagnosis Joanne has raised funds for research and tried to heighten the profile of familial Alzheimer’s.
The family has its own charity fund named after Joanne’s mum, Sylvia’s Star. So far they have raised £14,000. All the proceeds go to the Alzheimer’s Society.
Joanne has also spoken at conferences in America, Canada and Swit- zerland.
“So many do not even understand you can have a genetic form of the illness or that you can die from it so young,” she said.
“A lot of people do not even know you can die from it.”
Joanne is keen that Sylvia’s Star continues to raise cash to support people with dementia.
“Hopefully it will lead towards a cure so that my family can live without the fear of developing such an awful disease.”
To contribute to Sylvia’s Star visit www.justgiving.com/joanne-harrigan3 or email harriganjoanne@ gmail.com