Home' Southern Health News : Southern Health News April 2014 Contents 8 / APRIL 2014 / SOUTHERN HEALTH NEWS
BY KYLA GOODFELLOW
Physical symptoms ranging from
small twitches in the hands or feet to
involuntary limb movements and, in the
final stages, the inability to walk, swallow
Emotional symptoms including increased irritability
and impulsiveness, high anxiety, the onset of
psychotic disorders, obsessive compulsiveness,
hallucinations or bouts of depression sparked by an
overwhelming sense of loss.
Cognitive deficits such as short term memory loss,
the inability to reason and problem solve, and a
reduction in information processing speeds.
This is the ultimate reality faced by patients with
Huntington Disease and the realm within which
Flinders Medical Centre-based social workers
Catherine Christian and Irene Scott work.
While few people know of the devastation
inflicted by the hereditary and fatal disorder,
through their work with the South Australian
Huntington Disease Service (SAHDS) Catherine
and Irene have witnessed first-hand how the
ailment continues to afflict multiple generations
of families across the state.
Since the SAHDS’ formation in 1984, Flinders
Medical Centre (FMC) has played home to the
state-wide service, delivering social work and case
management services to people with Huntington
Disease, their families and carers. FMC also
remains the centre of the state’s predictive and
prenatal testing program for people considered
‘at risk’ of Huntington Disease.
First coined in 1872 by American doctor George
Huntington as hereditary chorea – a Greek word
meaning to dance – the condition is better known
for causing involuntary limb movements.
However, after a combined 20 years with the
SAHDS, both Catherine and Irene know only
too well the painful journey faced by people
with Huntington Disease - the inevitable loss
of work and independence, financial hardship,
relationship breakdowns, social isolation and lack
of understanding from others.
“As Huntington Disease develops it creates many
physical and emotional challenges in a person’s
life. We aim to help our clients find ways to adapt
to the changes they experience and maximise
their quality of life” Catherine said.
Irene and Catherine support about 160 clients
across the state at any one time, travelling to
towns as far away as Port Lincoln and Mount
Gambier to visit clients in their home setting.
“We try to help our clients maintain their
independence and connect them with support
services as required,” Irene said. “Sometimes
that’s getting access to mental health services,
referring them to disability or community services,
or advocating appropriate housing.”
Support by the SAHDS is often spread across
multiple generations of one family, with each
child of a Huntington Disease patient dealt a 50
per cent chance of acquiring the disease.
“It is very much a family condition and often we
find we are working across three generations of
one family, so we do become quite involved with
people,” Irene said.
Both Catherine and Irene remain inspired by their
clients’ everyday achievements, sense of humour
and ability to just get on with life.
“We enjoy the personal connection we have
with our clients. We focus on what they can do
rather than their deficits and make the most of
opportunities to have a laugh together,” Irene
The South Australian Huntington Disease Service
also comprises a psychiatrist and medical scientists
based at FMC, along with a geneticist and genetic
councillors from the SA Clinical Genetics Service
located at the Women’s and Children’s Hospital.
Huntington Disease is an inherited
Cells in the parts of the brain responsible
for the motor, cognitive and emotional
functions die, very slowly causing the
Huntington Disease does not skip
Each person has a different combination
of symptoms and may not usually
experience them all as a problem.
People usually live with symptoms
without needing help for years.
As Huntington Disease develops people
need help to manage everyday tasks
such as paying bills, cooking, cleaning
In the last stages people require 24-hour
Symptoms usually start when a person is
aged between 35 and 50, but can occur
at any stage of a person’s life.
Huntington Disease progresses very
slowly over a period of 15 to 25 years or
longer. The average life expectancy after
onset is between 20 and 25 years.
There is currently no cure for Huntington
There is medication available to
help people manage symptoms of
the condition, such as involuntary
movements, depression and anxiety.
There is a lot of research being
conducted across the world to develop
a treatment that will deal with the cause
of Huntington Disease rather than just
Flinders Medical Centre:
the birthplace of SA’s
Huntington Disease service
Huntington Disease Service FEATURE
We aim to help our clients
find ways to adapt to the
changes they experience and
maximise their quality of life.
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