If you haven’t already SEEN THE VIDEO, you can check it
out here HISTORY MADE! Meniere's Disease & Meniere's Australia recognised by Australian Parliament along with some of my highlights from the speeches.
According to Ms Jill Hall MP, she does
"not expect that there will be further debate". The motions will probably
be voted on in the next House of Reps sitting week starting Tuesday 9th October 2012.
If you live in Australia, SEARCH for the Senator &/or Member in your electorate, email them ASAP and let them know
you support the motion on Meniere’s Disease put forward by the Hon Mr Bruce
Billson. Together we can BE HEARD!
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HOUSE
OF REPRESENTATIVES
PROOF
Federation
Chamber
PRIVATE
MEMBERS' BUSINESS
Meniere's
Disease
SPEECHES
Monday, 10
September 2012
Meniere's Disease
Debate resumed on the motion by Mr Billson:
That this House notes:
(1) the work of Meniere's Australia in developing and
improving services in Australia for people living with the distressing
consequences of Meniere's disease and other unseen Vestibular Disorders;
(2) that vertigo, dizziness, balance problems, hearing loss
and tinnitus are common symptoms of Meniere's disease which lead to sudden
debilitating attacks, loss of employment, social isolation and loss of
confidence and personal capabilities in everyday living activities;
(3) that the exact number of people affected by Vestibular
Disorders is not known as the conditions are under-diagnosed and
under-reported;
(4) that the research from the United States of America
indicates that up to five per cent of the population may be living with one or
more vestibular conditions which translates to one million Australians; and
(5) that with more support, Meniere's Australia Support
Groups would be able to provide much needed counselling, practical advice,
information and peer support to both individuals and their families and carers.
MrBILLSON (Dunkley) (19:58): Meniere's disease is a condition that
really is an enormous imposition on many Australians, and I am pleased that the
House has afforded some time this evening to talk about the condition and what
we can do about it and the support that is available. The motion that stands in
my name recognises the work of Meniere's Australia, a fantastic group of
people. Their efforts in developing and improving services to Australians
living with the condition—which can, as I mentioned earlier, be extraordinarily
distressing—are to be commended. Their work with Meniere's disease and other
vestibular disorders is to be recognised tonight in this debate.
The motion also
recognises that vertigo, dizziness, balance problems, hearing loss, and
tinnitus are common symptoms of Meniere's disease, which leads to sudden
debilitating attacks that can cause loss of employment, social isolation and
loss of confidence, particularly for people concerned that the condition limits
their mobility and capacity to get out of the home and also impacts on their
personal capabilities of leading an active and independent everyday life.
The motion also
recognises the exact number of people that live with vestibular disorders.
Meniere's disease is not well known and the conditions are underdiagnosed and
underreported. It touches on some research from the United States that
indicates up to five per cent of the population may be living with one or more
vestibular conditions, which in our case would translate to around one million
Australians.
The motion also
points out the simple, and I hope obvious, fact to the parliament that
Meniere's Australia support groups could do a whole lot more with a bit of
additional support in the counselling they provide, the practical advice they
offer to families and those suffering with vestibular conditions, and the
information and peer support network could extend further. For those that are
listening, particularly philanthropic organisations or even those operating in
the hearing loss area, some support for Meniere's Australia would be a terrific
measure.
Meniere's disease
is a condition in which there is excess fluid in the inner ear. The excess
fluid disturbs the ear's balance and hearing mechanisms and produces a range of
symptoms, some of which I touched on earlier. It is quite a frightening
condition in that the attacks usually centre around vertigo. I had the
misfortune of an inner ear infection a few months ago and Meniere's Australia
representatives reminded me that I had a first-hand sense of what many of their
members were experiencing quite regularly. It is very disturbing when one's
mobility is completely compromised and you are not even sure whether you can
lie still in bed with any great grace. You can imagine the enormous impact this
must have on the quality of life of people who suffer from this condition and
these quite debilitating symptoms regularly.
The attacks of
vertigo usually occur in clusters with varying periods of remission. It might
be matter of days or some years between attacks. The attacks can occur without
warning and you cannot predict how severe the vertigo will be or how long it
will last. Tinnitus, distorted hearing, pressure in the ear and a feeling of
fullness in the ear due to the fluid build-up often occur in conjunction with
vertigo. In the early stages of the condition, hearing returns to normal levels
following an attack but the disease progresses measurably and permanent hearing
loss occurs. Estimates vary but around 90 per cent of people with Meniere's
have the disease in only one ear when first diagnosed. However, around 50 per
cent of these may go on to develop the disease in both ears.
According to the
ABS population health survey in 2005, Meniere's disease affects one in every
600 Australians. It appears that Meniere's is diagnosed, if it is diagnosed at
all, around the late 30s to early 50s. It is uncommon for children to be
diagnosed with the condition. Unfortunately this period, this window in
people's lives, when diagnosis is most likely occurs coincides with some of the
busiest times in their lives in careers and families.
There is no known
medical cure for Meniere's. The condition can be managed to some degree through
medication, diet, stress reduction, exercise programs, natural therapies and,
as a last resort, perhaps surgery. This is where Meniere's Australia's work
becomes so important in providing information to sufferers and their families
about how to manage the condition, how to sustain the best quality of life and
how to engage in their community and with their work and families, mindful that
there is no medical cure for the condition. There are treatment options for
acute attacks of vertigo as well as options for managing the symptoms that are
experienced and possibly some steps that might reduce the severity and
frequency of further attacks.
Although it is not
life-threatening, the disease can be life destroying. There is a great deal of
fear and uncertainty which may accompany the symptoms and a sufferer may appear
perfectly well and then be unable to stand up straight or unable to hear
properly or be coping with severe and uncontrollable ringing or roaring noises
in their ears. This can result in enormous problems for their employment,
resulting in financial hardships and difficulty with family and friends. So, whilst
the condition may be able to be alleviated and managed, it is, sadly, normally
a progressive condition that is irreversible. As I said, the causes as well as
treatments remain unknown. The anxiety it provokes can be extraordinarily
debilitating and create of itself a sense of stress, suffering and
helplessness. This is why organisations like Meniere's Australia are so crucial
to steer sufferers and their families through what can be an extraordinarily
horrendous time for them and a time of enormous adjustment.
Meniere's disease
falls between the cracks in the current health care system. Sensory hearing
loss is identified as one of the worst consequences of Meniere's disease, and I
was happy to be talking with the Australian Hearing Service, which has a
terrific outlet located in my electorate in Frankston, about the overlap
between the treatments and services they provide and conditions such as
Meniere's which may not immediately appear to be a hearing condition, but that
is where some of the most profound symptoms arise. However, there is the
chronic illness component with the vertigo attacks and the vestibular
impairment that is not addressed well by these current health system
arrangements.
When we looked at a
2007 report known as Listen here!: The economic impact and cost of hearing
loss in Australia, the economic consequences through lost productivity and
direct cost was enormous: about $6.7 billion a year lost to the Australian
economy because of hearing loss conditions, and Meniere's is very much a part
of that. It is well documented that the real cost might be as high as $11.75
billion, which in 2007 was 1.4 per cent of GDP, according to research by Access
Economics. This is an enormously significant impact on an individual's life and
their families but the consequences for the nation, in my view, warrant it
getting greater attention in our health strategies.
We need to know how
many people actually have this condition—that is the first impediment in
tackling it: in not knowing what the incidence and prevalence of different
conditions around Meniere's and the hearing loss that results actually is. I
mention that 2005 survey that shows that there is one in 600 or 606, as the
case may be, is what the ABS puts it at. But there are potential data
collection points right throughout the health system, when patients present
with symptoms of hearing loss, vertigo and tinnitus at ear, nose and throat and
neurologist clinics and hospitals across Australia. Some effort to capture that
would help to inform policymakers about what is the best thing that we can do.
While all this is
going on and there is a lack of coordinated effort in terms of the health
system generally, the Meniere's Support Group and Meniere's Australia are
simply getting on with the work. In their own survey of their members in 2006,
they captured the spread of diagnostic age between 30 and 50, and 54 per cent
of those that were members were diagnosed while they were still actively in the
workforce—so you can see that economic consequence. Twenty-one per cent of the
members reported that they had to take paid leave because of their Meniere's
condition and 16 per cent said they had reduced working hours.
Tonight's motion is
to add strength to the arm of Meniere's Australia. I am a little bit parochial.
Its information resource centre happens to be located in Dunkley at very modest
offices as they look use new technology to share their learnings about how to
cope with the condition and maintain a quality of life. Natasha
Harrington-Benton is the director of Meniere's UK and she was in our country recently
to do presentations in both Melbourne and Sydney with Professor Steve O'Leary
and Professor Bill Gibson, hoping to internationalise the work and the
insights, and to make sure that there is more peer support and resources
available. Neither the group here in Australia, nor in the UK, get government
funding. It is a bit of a shout out to the philanthropic community to get
behind Meniere's Australia. I also want to tip my hat to John Cook and the very
dedicated team at the resource centre; and also to Lynn Polson OAM. Her work
for Meniere's Australia—and John's—is to be commended. (Time expired)
MsHALL (Shortland—Government Whip) (20:08): It is with great pleasure
that I rise to speak on this motion and I congratulate the member for bringing
it before the House. Meniere's disease is one of those diseases that people
know very little about and it can actually take a person's life away from them.
I want to dedicate the first part of my speech to what Meniere's disease is.
There are the classic symptoms of vertigo, dizziness, alliance problems,
hearing loss, tinnitus—they are all very common features of Meniere's disease leading
to the sudden debilitating attacks where people really cannot function. It also
leads to loss of employment, social isolation, loss of confidence and personal
capabilities in everyday life. I have three acquaintances who have suffered
from Meniere's disease.
They have had all
the symptoms: the vertigo, the nausea and the vomiting. People do not realise
how bad that can be. People cannot lift their head off their pillow because
their Meniere's disease is so bad. Symptoms include the vertigo, the dizziness,
the fluctuating hearing loss, the tinnitus, the feeling of pressure or fullness
in the ear, and the excess fluid disturbing balance and the hearing mechanism.
It produces all those symptoms. When you are suffering from those symptoms and
you could have a severe attack at any moment, it is really debilitating.
It often takes a
while to diagnose that a person is actually suffering from Meniere's disease.
One person I saw having a very severe attack looked like they were having a
seizure. They had exactly the same sorts of symptoms. The person had lost
control of their body and they were unable to function, but it was Meniere's
disease. In the earlier stages it is really hard to predict how often a person
will have an attack. It is hard to diagnose and the periods of remission change
from time to time—they will lessen, they will disappear and then they will
return. I have been told that vertigo creates a sensation of spinning. The
whole room you are in starts spinning around you, and it can last from 10 minutes
to several hours.
The woman that I
saw having a Meniere's attack rarely leaves her house now. Her life has totally
been taken from her. She does not drive and she is reliant on her partner for
the basic support within her house. Regarding the room spinning, if she has an
attack she manages to get to a wall of the room and then walks along the wall
to gain some sort of stability. It is a horrible feeling. There is nausea,
seasickness, dizziness and the feeling that you are going to fall, so she has
the security of the wall. It is terrible. It can even lead to loss of bowel
control and your basic functions. The fact that you cannot predict when you are
going to have an attack is a really debilitating side-effect of being a
sufferer of Meniere's. There is the unsteadiness when you are moving
rapidly—and that can happen even when you are not having an attack—the tinnitus
and the distortion of hearing.
The brother-in-law
of one of my staff members suffers from Meniere's disease. He described it to
my staff member as though somebody is kneading his brain. That is the feeling.
He was in a very responsible job and he had to give up work, so he is now
unemployed. I do not think that we can emphasise enough the debilitating effect
of it. Meniere's disease is one of the silent diseases that not many people are
aware of, including the debilitating nature of it.
In my research I
found that Meniere's disease has three stages. Stage 1 is when the vertigo is
in a form where you get dizzy. By the time you present for your diagnostic
test, your ears have returned to normal.
That leads to it
being very difficult to diagnose a person like the one I was talking about, the
woman who is so debilitated by it. It took a very long time before they could
diagnose the problem. Half the people that are affected with it at this stage
go into remission. Stage 2 is where it is easier to diagnose Meniere's disease.
The attacks of vertigo continue, the tinnitus increases, the feeling of
pressure or fullness in the ear may worsen and hearing fluctuates but never
quite returns to normal levels, so it is always there.
The important fact
is that it is a chronic, lifelong disease, it is a very debilitating disease,
and there is absolutely no cure for it. It is commonly found in adults that are
in their 30s or older. The member for Dunkley mentioned 30 to 50, and that
would probably be the age group that it is mostly found in. I am sure he has
researched it well. It really causes underlying psychological problems. People
lose their confidence, their self-esteem and their independence.
The other part of
the motion that I would like to turn to now relates to Meniere's Australia and
the work that they do. Support groups in our society—such as Meniere's
Australia, the post-polio support group that I am closely involved in, asthma
support groups and the Heart Foundation support groups—really do a marvellous
job. Meniere's Australia is a not-for-profit non-government organisation which
promotes the development of Australia-wide services and supports people that
are living with Meniere's disease. Meniere's Australia was founded by the
Meniere's support groups of New South Wales and Victoria. I know the member for
Dunkley has already shared with us the fact that the office is in his
electorate. It is affiliated with the Meniere's Research Fund, which is
administered through the University of Sydney medical foundation. The mission
of the Meniere's Research Fund is to raise funding to support research into
Meniere's disease and to finance the expansion of the Meniere's disease
research laboratory. The fund currently holds $1.5 million, sourced from
donations, community fundraising and funding grants. It has a target of raising
$2.5 million, but $2.5 million would just be scratching the surface.
I have been advised
that the government recognises, and the minister has told me that she
recognises, the importance of Meniere's Australia. She knows that their work
helps people along and gives them the support they need when they are suffering
from Meniere's disease. All these support groups—and Meniere's Australia is no
different—need to have the work that they do acknowledged. I know that
sufferers of Meniere's disease rely on Meniere's Australia. I congratulate them
on the fine work that they do, and I think that research into this disease is
well and truly needed. (Time expired)
MrCRAIG KELLY (Hughes) (20:18): I am pleased to second the motion moved
by my good friend the very handsome member for Dunkley. I welcome the
opportunity to discuss an issue that is important to many families across our
nation and to participate in this debate in expanding both our parliament's
knowledge and the knowledge of those listening in at home on a disease that
affects approximately one in 600 Australians. Meniere's disease is a disorder
of the inner ear, associated with a change in the volume of fluid inside a
portion of the inner ear called the labyrinth. It causes episodes of vertigo
and tinnitus, which is a constant buzzing or humming noise in one's ear; a feeling
of fullness or pressure in the ear; and fluctuating, progressive low-frequency
hearing loss.
Meniere's disease
was named after a French physician, Prosper Meniere, who first identified the
cause of this disorder back in 1861. It is a disease that can develop at any
age but it is more likely to happen in adults aged between 40 and 60 years of
age. Also there is no definitive test for Meniere's; it is only diagnosed when
all other causes have been ruled out.
A diagnosis of
Meniere's is not promising. Although Meniere's will not directly kill you, it
is likely to make your life miserable in a way that few other diseases can. A
Meniere's episode generally involves severe vertigo, imbalance, nausea and
vomiting with the average attack lasting for two to four hours. After a severe
attack, most people find that they are extremely exhausted and then need to
sleep for several hours.
The condition
affects people differently: it can range in intensity from being a mild
annoyance to a chronic, lifelong disability. It is important to appreciate how
devastating the impact of the symptoms can be, and the natural deteriorating
progression this can have on individuals suffering from the disease. Those who
have experienced it describe it as frustrating, disabling, and disheartening—something
they say, you could wish only upon your worst enemies.
Currently, there is
no known medical cure for Meniere's; however, the condition can be managed to
some degree through medication, diet, stress reduction, exercise programs,
natural therapies and, as a last resort, surgery. It is a progressive disease
which worsens, more slowly in some and more quickly in others. Some patients
experience periods of remission for no apparent reason. Some remissions may
continue for many years; even decades. Other remissions are sadly short-lived.
Although the attacks of vertigo may decline with time, the hearing loss and
tinnitus generally persist.
Many people
suffering from Meniere's disease lead productive, near normal lives; while
others face greater challenges in coping. I can think of only a few situations
more stressful and draining on one's mental condition than the combination of a
droning, ringing noise inside your ear and not knowing when you may lose
control of your body, suffering an attack of vertigo, nausea and vomiting. It
is no surprise that those suffering from this disease in many severe cases may
end up losing their jobs and will spend their lives on disability. However,
thankfully the statistics show that the majority, perhaps between 60 and 80 per
cent of sufferers, will not need permanent disability and will recover with or
without medical treatment.
Many theories exist
about what happens to cause Meniere's disease but no definite answers are
available. Some researchers think that Meniere's disease is the result of
constrictions in blood vessels, similar to those that cause migraine headaches,
and others think is brought on by allergies. This demonstrates the importance
of medical research and that is why this motion is important to recognise the
great work being done by the broader community to provide awareness, much
needed counselling, practical advice and information to peer groups,
individuals, families and their carers.
Ultimately, it is
medical research that has the potential to ease the pain, suffering and
hardship of those suffering from Meniere's disease. That is
why in this place we need to declare a war on waste and inefficiency. We need
to declare war on those who seek to divert our scarce and precious resources
into inefficient methods of production, for we have seen that this waste and
inefficiency has an opportunity cost, and one of those opportunity costs is
reduction in the spending on medical research to reduce the pain, suffering and
hardship of those affected by diseases such as Meniere's. (Time expired)
MrNEUMANN (Blair) (20:23): For some people their favourite Alfred
Hitchcock movie is Rear Window but mine is Vertigo and that is
because I am a James Stewart fan for a start and I thought that Kim Novak was
pretty hot. One of the things we would say today about the character played by
James Stewart—Scotty, if I remember rightly—who is a former police detective
who becomes a private eye and suffers from vertigo is that he had Meniere's
disease.
We know a lot more
about it these days than they did in 1954, when the novel was written, and when
the movie was produced and filmed, in 1958. Medical science has developed a lot
since that time, and there has been much development in this area.
Sadly, the
character in the movie is affected in such a graphic way and shows all the
symptoms on Meniere's disease—the vertigo, the dizziness, the nausea. All those
symptoms are displayed clearly in the Jimmy Stewart character. I think the
novelist was describing someone who had Meniere's disease, and Alfred Hitchcock
did a terrific job in that.
The government has
provided advice through the competitive funding rounds, the research base and
the hearing loss prevention program and the National Health and Medical
Research Council medical research grants. But there is a lot more to be done.
We have provided assistance and advice to the Office of Hearing Services with
information about what steps can be undertaken and what funding sources are
available from state and territory governments as well as some private sources.
This is a chronic
incurable condition of the inner ear and it produces a range of debilitating
side effects, ergo Scottie in Vertigo. It can affect hearing and
balance to a varying degree and there are different stages, as the member for
Shortland said. It is characterised by a period of vertigo. All of us who have
played sport and had a hard knock or felt unwell would have experienced
vertigo. Imagine how debilitating it would be to have that on a daily basis.
Then there is the low-pitched tinnitus. My wife has had tinnitus for quite some
time and I know how it has impacted on her. But there is hearing loss as well.
This is a terrible condition which affects people. All the symptoms that
previous speakers have talked about really show the impact it has on people's
lives—from mild annoyance to chronic lifelong disability.
I am sure there are
many people with Meniere's disease amongst the 800,000 people on disability
pensions in this country. Sadly, it is not diagnosed as freely and effectively
as it should be. Meniere's Australia is a not-for-profit organisation and, like
so many in our electorates across the states and territories, they do great
work in advising and informing people of the condition and assisting the
understanding and appreciation of what these people suffer from. Many years ago
there would have been tremendous misunderstanding about this condition. People
would have been accused of faking it. People would have said, 'What's wrong
with you?' This is a real condition that affects a lot of people.
Meniere's Australia
provide for health professionals and individuals who experience these
problems. They seek funding opportunities and they provide information and
resources to doctors and allied health professionals who deal with the people
who suffer from this condition. One of the most constructive things a person
can do if diagnosed with this condition is to learn as much about it as
possible. These supports groups are extremely valuable. I would urge anyone in
my electorate who suffers from these conditions to seek medical advice. This
disease affects about 190 per 100,000. Gender studies indicate that women are
more likely than men to suffer from this condition. There is no definitive test
for Meniere's disease. It can only be diagnosed when all other things are
excluded. I was recently talking to Dr David Careless, a physician in my
electorate, in relation to another disease and he told me there are many
diseases like this where you only work out what the condition is after doing
all the tests. He said it has been his sad duty on many occasions to tell a
patient that they have chronic fatigue, fibromyalgia or some other condition.
It is only after doing all the tests that they understand. Information is
critical.
There are things
that can be done—environmental changes, dietary changes and exercise—but
nothing solves the problem. There is a lot more we can do to ease the stress
and anxiety. I commend the member for Dunkley for this motion and I commend
Meniere's Australia for the work they do in helping people across the country.
MrMcCORMACK (Riverina) (20:29): One in six Australians has a hearing
loss. With the ageing of our population, hearing loss is projected to increase
and affect one in four by 2050. Hearing loss can result if there is a problem
at any point in the hearing pathway—in the outer, middle or inner ear, or in
the complex auditory nerve pathway to the brain. Many people who experience
hearing loss can feel isolated and frustrated.
However, there can
be a lot of different avenues that it can take for someone with regular hearing
loss, such as congenital hearing loss that has been present since birth, or
acquired hearing loss that occurred later on. Yet there is a disease known as
Meniere’s disease, which can see sufferers slip through the cracks of the
healthcare system and not receive the treatment they so desperately need or
deserve.
Meniere’s disease
is a debilitating progressive condition of the inner ear—or, put simply, it is
a condition in which there is an excess of fluid in the inner ear. Meniere’s
disease can produce symptoms such as vertigo, a form of dizziness where your
surroundings appear to spin, or tinnitus, an abnormal ringing noise inside the
ear, or fluctuating hearing loss or a feeling of pressure or fullness in the
ear due to a fluid build-up.
A great deal of
fear and uncertainty can accompany these symptoms. A sufferer may appear well
but may be unable to stand up straight, unable to hear properly or be coping
with severe and uncontrollable ringing, humming or roaring noises. These types
of issues are associated with the disease and can make people feel isolated,
frustrated, embarrassed and even difficult to cope with.
There are different
estimates of the number of Australians with Meniere’s disease. According to
research from the United States of America up to five per cent of the
population in that country may be living with one or more vestibular conditions
such as Meniere’s disease. Hearing Australia's best estimate is that there are
40,000 people with Meniere’s disease, with new cases of about 4,000 people
annually. According to Meniere’s Australia, a not-for-profit organisation,
hearing loss with Meniere’s disease can fluctuate according to the stage of the
disease.
Dietary and
lifestyle changes are important in managing the personal impact of Meniere’s
disease. There is increasing evidence that further loss of hearing can be prevented
by receiving the right information. So there needs to be a greater
understanding by health professionals so that they can quickly diagnose a
problem, and they need to work with individuals in the mental health sector as
issues within the inner ear can cause stress, anxiety and depression. One of
the biggest issues with Meniere’s disease is that it can go undiagnosed. So,
anybody with the sort of symptoms that I and other speakers have mentioned
should seek the necessary medical help and service.
Many sufferers of
Meniere’s disease and other vestibular disorders can experience social
isolation and loss of confidence, which can result in problems with their
employment and their relationships and it can possibly catapult them into
financial hardships and difficulties with their families and personal lives.
According to Listen
Hear! The economic impact and cost of hearing loss in Australia, identified
productivity loss related directly to hearing impairment accounts for more than
half of the total financial costs, or some $6.7 billion a year. It is well
documented that hearing loss represents a real financial cost to Australia of
$11.75 billion per annum, or 1.4 per cent of gross domestic product, according
to the research study by Access Economics.
Meniere’s Australia
was unable to identify any particular support groups within the Riverina
electorate. However, a spokeswoman for MA did say that one of the biggest
issues they had with getting support for Meniere’s disease sufferers was having
someone well enough to hold the forums or support groups.
Many sufferers of
Meniere’s disease find out about their condition after it is too late to turn
back. Once their vertigo or tinnitus has reached the extreme, many feel they
are no longer capable of functioning. It is one of the reasons Meniere’s
Australia was established. In 2007 it was registered with the objective of
working to improve the diagnosis, treatment and management of this debilitating
disease.
There is
unfortunately no treatment for Meniere’s disease, but many things can be done
to assist sufferers in the early stages. One of Meniere’s Australia's biggest
challenges is making the community more aware of the issue, because with more
support Meniere’s Australia's support groups would be able to provide much-needed
counselling, practical advice, information and peer support to individuals,
their families and their carers.
I commend the
member for Dunkley for bringing this important private member's business matter
for discussion in the parliament. This debate helps to raise awareness about
Meniere’s disease and the umbrella group that is doing important work to combat
the disease. It shows the member for Dunkley's care and concern for this little
known condition. I commend the motion to the House.
Around about 40,000
Australians are thought to suffer from some degree of Meniere's disease. Most
people will not have heard of it until they have a family member or friend who
is affected. No doubt there are people working in this building who are
affected by it, even people who are listening to this debate today or reading
it afterwards in the Hansard. I know of constituents who suffer from
Meniere's disease because I have had contact from them directly. Indeed, I have
a staff member who suffers from the disease and I have watched how it has from
time to time debilitated her and severely impacted on her enjoyment of life and
her capacity to work over the time that I have known her.
It seems that those
who have this syndrome are affected in vastly different ways. As has been
mentioned already, Meniere's is a syndrome in which excess fluid disturbs the
balance of the inner ear and hearing mechanisms and produces a range of
symptoms. Some of these symptoms include vertigo, tinnitus, fluctuating hearing
loss and a feeling of pressure or fullness, like the ear is full of water.
Sometimes it is like the feeling you get after having a swim in a swimming
pool. Experiencing these symptoms can be debilitating, demoralising and very
distressing.
For those with
Meniere's, the random onset of these symptoms is extremely frustrating. One
minute you are fine and functioning normally then the next minute you are
suffering from vertigo, where you lose all sense of balance and are kept
virtually immobile. To move even slightly causes the room around you to spin,
causing a disturbing sense of disorientation. Vertigo attacks like this can
last for hours and sometimes days and can even be accompanied by vomiting as
your body responds to the lack of balance. For those witnessing attacks of
vertigo, it can be hard to understand what is actually happening to the person
in front of them. The symptoms are hard to understand and explain, even for
those who are suffering them. The words, 'I'm sorry—I feel dizzy now and have
to lie down,' can interrupt business meetings, running daily errands or social
outings.
Because the
symptoms are so broad and non-specific, Meniere's is often misdiagnosed. The
relatively low profile of Meniere's means that it can be hard to get the
correct diagnosis and treatment. It has three stages: stage 1 is the lowest
impact and stage 3 the worst. Some sufferers do not progress beyond stage 1,
where the symptoms pass more quickly and where people can stay in remission for
months and sometimes even years. They are the lucky ones. For people in stage
1, managing the triggers for Meniere's is all important. Dietary changes can
lessen the long-term effects of Meniere's disease. For example, because
Meniere's is caused by an excess of fluid in the inner ear, for many reducing
salt intake can lessen the symptoms of the disease. That is hard, because salt
is prevalent in just about everything we eat.
For those in stage
3, Meniere's is almost completely debilitating. In stage 3, Meniere's will
force drastic changes to how life is lived every day. Some people are no longer
able to go out of the home unaccompanied. They may have to give up driving and
their independence. For some people whose Meniere's is triggered by bright
lights, they cannot enter a shopping centre or supermarket. I have a
constituent in my electorate who has stage 3 Meniere's and managing the disease
completely dominates her life. Her frequent incapacity affects relationships
with family and friends and caused her to abandon her employment. She has been
jeered at as she staggered along the road, trying to get to a safe resting
place, by passers-by who mistakenly thought that she was drunk. It is an
unfortunate consequence of the public awareness of this health issue being very
low. Meniere's is a difficult and challenging syndrome, and once again I thank
the member for Dunkley for raising the matter in the House today. (Time
expired)
Debate adjourned.
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