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The family connection with Huntington’s disease at St John of God Halswell

Rachel was initially distressed when she received her Huntington’s disease diagnosis, but it has led to a different perspective on life and stronger bonds with her family.

When Rachel’s mum was diagnosed with Huntington’s disease in the late 1990s, she knew there was a 50 per cent chance that she and her brother would also have the Huntington’s gene.

However it was not until 2003 that Rachel was tested for the disease.

“I was very angry about it but I got over it,” Rachel said.

By 2017, Rachel’s condition had progressed to her needing ongoing care and she moved to St John of God Halswell.

She said leaving her family behind was the hardest thing to do – but regular visits from her father (who visits both Rachel and her mother), and her husband and two children help.

While her family visits are Rachel’s highlight, she also enjoys the environment and activities on offer.

“There’s so many pub lunch, the art show, waterslide day, Fear Factor Challenge, make-up day, church services, the dune-buggy rides,” she said.

“It’s a great place - a nice family place.”

A little more about Huntington’s disease

Huntington’s disease is described as an inherited and progressive brain disorder.

It causes cells in specific parts of the brain to die which, over time, results in impairment of both mental capability and physical control.

Huntington’s disease is a genetic disorder. About one in every 10,000 people has Huntington’s, but one in every 1,000 are personally affected by this either as a caregiver, family/whanau member or friend.