HON ALISON XAMON (North Metropolitan) [6.20 pm]: Members may not be aware that this month is international Retinitis Pigmentosa Awareness Month. It is a month that I have become aware of only fairly recently, but the purpose of it is to try to draw attention internationally to the condition of retinitis pigmentosa because it is not a very well known condition. It is symbolised by a purple and white ribbon. I went looking for something along those lines, but, unfortunately, they are not generally made available. It tends to be largely an online international awareness-raising campaign.

For members’ interest, retinitis pigmentosa, or RP as people who have it refer to it, is a group of genetic disorders that involves a progressive degeneration of cells in the retina, or the rods and cones that are the light-sensitive tissue that lines the back of our eyes. Inherited retinal diseases are the primary causes of youth blindness in Australia. It is also the most common cause of blindness in working-age Australians. There are quite a lot of common symptoms of retinitis pigmentosa, including complete night blindness, a loss of peripheral vision that becomes more progressive, and light sensitivity. The loss of peripheral vision also means that people lose the capacity to pick up contrast and to determine depth.

Retinitis pigmentosa is very rare. Only one in every 3 000 Australians are affected. The symptoms usually start to appear sometime between the ages of 10 and 30 years. It is quite uncommon for children to develop retinitis pigmentosa; it generally starts to appear in those in the 20 or 30-year age group, but it can start to appear in those in their late 50s or 60s. It is an inherited disorder and results from harmful changes in any one of more than 50 different genes. The condition varies greatly. The Lions Eye Institute has told me that there are potentially 350 different types of retinitis pigmentosa, so, unfortunately, it is impossible to accurately predict how RP is going to progress in each individual person. That means that although some people with RP may retain some limited vision throughout their life—this condition is often described as reducing vision to the point at which the person feels like they are looking through binoculars—others end up losing their sight completely.

Currently, there are no known treatments to prevent or even to slow the progression of retinitis pigmentosa. Because there are so many forms of retinitis pigmentosa and because it is so rare, it is very hard to get the research to find which treatments potentially would work. It is the case that even if a treatment were found to work in one type of retinitis pigmentosa, it is very unlikely that it would apply to the many other types of retinitis pigmentosa. Nevertheless, there is ongoing research. Research is occurring around gene therapy, stem cell treatments and the creation of artificial vision devices, otherwise known as bionic retina. It is a little similar to the cochlear implants that we are very familiar with. They are looking at transplanting healthy retinal cells. International research is also happening into various types of medication that may help to slow down the damage of the retinal tissue. Unfortunately, as yet, nothing has been clearly demonstrated to have an effect. For those people who have retinitis pigmentosa, there is enormous hope that in the future we might have the technologies or even the medical research to have some positive effects.

In Western Australia, we play a particular role that we should be very proud of in the international research into retinitis pigmentosa. The Lions Eye Institute is part of the Australian inherited retinal disease registry, which is being maintained at Sir Charles Gairdner Hospital in Perth. It is working to characterise the genetic spectrum of inherited retinal diseases in Australia in order to guide research into treatments and cures. It currently has 7 000 DNA samples and it has genetically analysed more than 2 500 of these samples. It is currently collecting DNA at the rate of 400 to 500 samples each year. That is something that we should be proud of. WA is playing a key role in the research into retinitis pigmentosa at our very own Lions Eye Institute.

Many members will be aware that I have a family member who is affected by retinitis pigmentosa. I thank those members who have shown an interest in learning more about this and also for their kind words to me. I am aware that this issue absolutely crosses all political boundaries. This is one of those areas in which we as human beings are always interested in learning more about what we can do to assist people, particularly those who are losing a key sense such as their sight. I know that all members would be keen to do more in this space.

I wanted to rise and tell people that it is Retinitis Pigmentosa Awareness Month. If members wish to go online and republish on their own MP websites and Facebook pages any of the numerous social media memes to raise awareness, that would be great.


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