I rise today to speak about autoimmune disorders and the impact they have within our community. Autoimmune disorders occur when a person’s immune system starts attacking their own body. There are around 80 different autoimmune disorders, ranging in severity from mild to disabling, and for unknown reasons women are more likely than men to develop them. There is no known cure for most autoimmune disorders, and very often we do not even know how these disorders work, but symptoms can usually be somewhat managed, providing some relief for those with them.
Why is it important to talk about this? It is because autoimmune disorders affect around five per cent of the Australian population, and they are often chronic and have many associated impacts. In short, they have a really big impact on people, but as a community it is not something that we really think about or understand. The USA has a whole month set aside to raise awareness of these disorders and the impact that they have. That month is March, and it is in this spirit of awareness that I speak today.
I personally know about the impact of these disorders because I am one of those five per cent. I will never forget the day my GP called me and said, “You don’t have cancer, but something is really wrong and you need to go to emergency now.” That was 12 years ago. I was diagnosed with immune thrombocytopenia—or, as it was known then, idiopathic thrombocytopenic purpura, which I must admit I have never been able to properly pronounce, and I have always referred to it by its abbreviation, ITP. It is a rare disease affecting only three in 100,000 adults per year in Australia.
Mr Deputy Speaker, when you type in “ITP” to an internet search, you are flooded with information on where to find a tax accountant but not really any information on the disorder itself. The common understanding is that ITP occurs when the immune system starts attacking the body’s platelets, which are the things that make your blood clot, leading to a low platelet count and severe bleeding in the body. It means you get lots of bruises, pinpoint-sized reddish-purple spots called petechiae all over your skin, blood blisters in your mouth, a slightly yellowish sheen to your skin, astoundingly heavy periods, and in some instances internal bleeding, predominantly in the kidneys and bowel.
Treatment in the first instance usually involves corticosteroids, but if those do not work other options are drugs stronger than corticosteroids, transfusions and even splenectomies. I could run through all of these because, apart from the splenectomy, I have had all of them. Unfortunately, I also have a long history of none of these treatments ever working. I have just had to wait and hope that my body spontaneously helps itself out.
Mr Deputy Speaker, with the bushfires, the hailstorm and COVID-19, the start of 2020 was a lot for many Canberrans to deal with, but you can add to my list a looming election and, in January, confirmation that I had relapsed to a platelet level that needed medical intervention. Given my history of never responding to any treatment, the initial prognosis was, to put it mildly, not great.
I was told early on in my career not to speak about my health, even to those closest to me in politics, as it is not always the nicest profession. Given this advice, I would be lying if I said that I did not have concerns about some people using my disorder against me. So in 2020 I kept my condition mostly to myself. I was also hesitant to let people see me, especially when my symptoms were at their worst, in the first half of 2020.
While my immune system was a bit confused, the rest of me was fine and I could still do my job. That is what I got on with doing—leading support for Canberrans during the pandemic, supporting the vital work of the community sector during the COVID-19 shutdown and establishing the Canberra Relief Network, a nationally recognised initiative which ensured that Canberrans had food if they needed it during the pandemic. I also defended my seat in the 2020 election.
That brings me full circle to why I have risen today to talk about autoimmune disorders. While I am one person, I am one person of five per cent of people who, every day, face the same lack of understanding about what it is we are going through, which in turn makes us hesitant to speak about it and get the support we need, even while doing everything that people without the challenges of an autoimmune disorder do.
ACT Labor has several health commitments to be delivered in this term, and I ask that as these are implemented there is every opportunity to support people with autoimmune disorders. I hope that by putting this part of my story on the record, it encourages more people to speak up, to ask questions and, for those that do not have an autoimmune disorder, to go forward with an open mind and a bit more support.
