Rachel Steele wanted to plan for the future with her husband, Graham Cameron - but their lives changed after she received a positive result for the faulty gene, passed down through the generations, that causes Huntington’s disease.
It was only when the 33-year-old considered getting tested for the incurable disease that the data analyst realised the significance of “in sickness and in health.”
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She received the diagnosis in 2018 and, mercifully, Rachael is still healthy and has no symptoms of the condition, writes the Daily Record.
“There was counselling beforehand, which helped prepare me for whatever the result was going to be,” she told Lanarkshire Live.
“One of hardest things was telling my mum, June, who has Huntington’s disease. It was devastating – much worse than when she found out about herself. But now, some time has passed and we’re getting on with things.
"It does take a toll on Mum, but I’m thankful she’s keeping okay right now.”
Being tested is a personal choice. Many people at risk of have the life-altering disease choose to live their lives without finding out. Because there is no cure, they consider that knowing would not change their destiny.
“For us, we were moving towards getting married and maybe thinking about starting a family. Having a clear picture means we can look at our options and make decisions,” she said.
A child of someone who has the faulty gene has 50 per cent chance of inheriting it.
Severe symptoms of Huntington’s can include a loss of body control, leading to involuntary, repetitive jerky movements and the inability to walk, talk, eat, drink or swallow. Thinking processes may change and early on-set dementia can develop, as can mental illness.
And such a complex combination of symptoms can result in the need for 24-hour care.
Husband, Graham said: "When Rachael decided it was time to get herself tested, I was very anxious as I was fully aware that she had a 50/50 chance. I was ready to support her with anything that may happen, while obviously hoping for the best result.
“My heart sank when we found out the test had come back positive. I felt helpless, knowing there was nothing I could do to change it. All I knew was I had to be there for Rachael for whatever she needed.
“Since then, we try not let this interfere with our life together. I know that further down the line, the effects will become more apparent. But I remain positive that this will not be for a long time yet and I will always be there for Rachael, for whatever happens.”
Right from the start, the couple were open with friends, family and work colleagues.
When the newly-weds tied the knot last year, they didn't have traditional favours, instead making a donation to Scottish Huntington’s Association and giving every guest a pin badge.
That came as a surprise for mother-of-the-bride, June, who had no idea until she reached her table that every place setting included the special gift.
“Mum was very touched and our guests were delighted,” said Rachael, from Hamilton. “It was great to see everyone up dancing, wearing the bright blue badge. It’s never been a secret, but there were probably a few people on Graham’s side who didn’t realise how Huntington’s disease affects my mum.”
With the couple's first year anniversary just around the corner, the 33-year-old has become more involved with the work of Scottish Huntington’s Association as voluntary chairperson of the charity’s new Lanarkshire fundraising group.
The funds it generates will go towards lifeline services provided by the charity, including: HD specialists who provide emotional support and ensure the right package of care is in place; a financial wellbeing service that helps with access to benefits and other financial products; and a youth service for children and young people growing up in Huntington’s families.
The Lanarkshire group has been holding regular online meetings to plan its first fundraising event: a big Christmas fayre on Saturday, December 3, at West and Wardlawhill Church in Rutherglen.
“We’re determined to raise as much money and awareness as possible,” said Rachael. “Mum and I both have Scottish Huntington’s Association HD specialists, and every group member has a connection with Huntington’s disease, so we all know first-hand how much families depend on the charity’s services.”
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