Damian Hale (Solomon, Australian Labor Party) Share this | Link to this | Hansard source

I congratulate the member for Warringah for enlightening us on the Pollie Pedal ride for the cause of cancer. It is a great cause. I think that politicians at times are underestimated in what they do for the community.

I want to speak today about epilepsy. I know that we hear a lot about cancer, and there is a lot of money raised to research cancer, but a disease that affects some 200,000 Australians is epilepsy. It is a very common and most serious neurological condition in Australia. There is no cure for this condition, and there are various ways people can control or manage symptoms to improve their quality of life, particularly if the condition is identified and managed early.

Epilepsy is a disorder in the activity of nerve cells in the brain which is characterised by unpredictable, recurring episodes known as seizures. The location of the electrical discharges in the brain determines the parts of the body that are affected by seizure activity. The cause of epilepsy cannot be identified in nearly 70 per cent of all cases. There is a burden with epilepsy. The psychosocial and socioeconomic consequences of epilepsy often cause more suffering than seizures themselves. Problems arise in the fields of independent living, education and employment, mobility, personal relationships such as marriage, and insurance and law.

The reason I am very passionate about this subject is that my sister, Jacintha, suffers from epilepsy. She is a very professional lady; she is a school teacher. She was diagnosed with epilepsy when she was 22 years old. I still remember the phone call I received from my mother to say that my sister had had a seizure of some type. She was back from James Cook University on holidays when Mum heard a crash and bang and walked in to discover my sister having a seizure on the floor of her bedroom. It was quite disturbing at the time, not knowing what had actually happened. There was no apparent reason for her epilepsy. There was no history of it in the family and she had had no head injuries. It was very rare indeed to have an example of adult onset epilepsy and it has affected our family.

I have spoken to my sister because I wanted to know first-hand some of the things that have affected her life, professionally as well as personally, including having children—she is a mother of three. She said that when the kids were young they had to run things differently, including some of the little things that I suppose other mothers would take for granted. For example, my sister never bathed the kids unless there was someone else at home with her, and nappy changing was done on the floor if she was there by herself. She said the worst seizure she ever had happened when she was downstairs on a Saturday morning and she ended up with a black eye and lacerations to her feet and hands. Her daughter was only a few years old and witnessed this occurring, so it had an impact on her. What my sister used to do, which she said was quite amusing, was to pretend to have seizures in front of the children as they got older, putting herself on the ground and going into a seizure type activity, so that the children would learn how to react and what they had to do to bring it to the attention of my brother-in-law, Tim.

My sister went on to work in boys’ education. She left teaching for a little while but is back teaching now. It is amazing how many of her colleagues say that she is probably the best school teacher they have ever seen teaching year 12 English. In some notes she has given me about her experiences she says her job involved a lot of interstate travel and most of the travel usually involved two people going somewhere. But she remembers going on her first trip by herself and how terrified she was that she could have a seizure.

The reason I am talking about this is that Epilepsy Australia is looking to establish an office in the Northern Territory by the end of the year. This will be welcome because it is something that we need. The suicide rate among people with epilepsy is 25 times greater than the rate in the general population, and the Northern Territory is not immune from this. So I welcome the fact that the epilepsy centre will be established in the Northern Territory. And I find it quite humbling that I get to tell my sister’s story in this place. I am very proud of her. She is a great sister and her story deserves to be told. (Time expired)