Jill Hall (Shortland, Australian Labor Party) Share this | Hansard source

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)

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