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Issue 103, December 2008

Dilemma of tests that end, confirm hopes

People who have a family history of Huntington's disease face a difficult choice on taking a test that tells if they will get the fatal disease, writes KATIE WYLIE

  • It commonly starts from about age 30.
  • It becomes increasingly degenerative.
  • It is thought to affect about 500 to 600 New Zealanders.
  • People with one parent with the disease have a 50% chance of developing it themselves.
  • A predictive blood test can confirm whether people carry the disease gene.

If someone has a 50 per cent chance of developing a chronic, degenerative disease, is it better to have a test and confirm their fate or live in hope of a good outcome?

This is the predicament facing people with a family history of Huntington's disease, for which there is no cure.

London expert Dr Fred Kavalier, who is visiting Christchurch for a national conference on the disease this weekend, said those with one parent with the disease had a 50% chance of developing it themselves.

The disease is a genetic, neurological disorder, symptoms of which include jerky body movement, depression and mood swings, and memory loss. It commonly starts from about age 30, and becomes increasingly degenerative. It is thought to affect about 500 to 600 New Zealanders.

A predictive blood test, available to the children of those with the disease from age 18, can confirm whether they carry the disease gene. It will lead to the condition if present.

Christchurch caregiver Kimberley Dark, 28, has confronted the decision.

With a father who died from the disease, she decided she wanted to know her fate.

A blood test at 20 revealed she had inherited the disease gene. Her first symptoms - involuntary movements - appeared two years later.

"When I found out, I didn't even cry or anything," said Dark, whose life had been shaped by the result.

She got married 10 months after meeting her partner. "Why wait? Time is important to those of us with HD." The couple decided not to have children.

Dark's mother, Dianne Collins, the chairwoman of the Christchurch branch of the Huntington's Association, said this decision was necessary.

It avoided potentially passing the gene to another generation.

At her worst, Dark slurs her words, has mood changes and memory loss, and is prone to choking.

Dark's husband twice has used the Heimlich manoeuvre to stop her choking.

However, she is making the most of her healthier times to hot-air balloon and tandem skydive. She also works full-time at Brackenridge Estate - a supportive employer.

Dark has chosen not to see someone with the disease fully developed but has talked with her mother, who works in the funeral industry, about how she wants to be farewelled.

The family has been told disease sufferers have an average of 15 years from the onset of symptoms to death.

Dark plans to donate her brain to Auckland University's School of Medicine to enable researchers to work towards a cure for the disease.

The director of Huntington's disease research at the school, Professor Richard Faull, said researchers had various projects under way.

"We'd like to think something would come up in the next five years or so, but we can't predict, unfortunately."

Acknowledgement: The Press, Christchurch. Saturday, September 20 2008 Copyright

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