In our community, 1 in 10 women will have endometriosis. This is a startling figure that shows the level of impact on our population. Think of 10 women that you know and chances are 1 of these women will have endometriosis. It not only affects these women but their mothers, fathers, sisters, brothers, partners, employers, workmates and friends. This level of impact is similar to, if not more severe than other national health priority conditions. You typically don’t die from endometriosis, you and yours live with it, everyday, relentlessly.
Despite this level of impact, awareness of endometriosis remains very low. Many people may never have even heard of endometriosis, let alone understand the disease and it’s impact. Millions of women experience the symptoms of endometriosis and may themselves not know what is happening to them because even some of our medical community are still in the dark. Many women have suffered in silence and then waited to see if their daughters too will suffer in the same way. As I have said for every woman effected, there are mothers, fathers, sisters, brothers, partners, friends, employers and workmates impacted too.
Today we have Savannah with us. Savannah is one of two women in a company of 80 staff who have severe endometriosis. A recent internal staff survey across the group of 200 showed that 5% of staff had endometriosis and 5% had partners with endometriosis and 58% knew someone with endometriosis as well.
When Savannah and Anna spoke out recently at a company retreat on their personal experiences the room went silent, staff had tears in their eyes.
Then the response came and it was awesome. One senior staff member who Savannah works with closely and has done so for 2 years spoke up and said “oh my God that’s why you threw up in the cubicle next to me the other day”
Savannah’s reply was “yes, when the pain’s that bad that’s what happens”.
The CEO of this company has now made the education of it’s employees and its clients a priority.
This has also lead to an internal acceptance for more flexibility in the workplace for those affected. As recently as last week, Savannah had to take time off because of an endometriosis attack. The response from her male supervisor was “We’ve got you covered!” That didn’t happen before.
Can you imagine the awareness we could raise and the women we could help if corporates, small business and government employers followed this lead.
Lack of awareness in our community has lead to late diagnosis, missed treatment opportunities, loss of jobs, lost productivity, loss of daily functioning and even suicide and death. Without awareness in the community, we cannot effectively support 1in10 women.
Raising awareness across Australia is crucial to helping to address the burden that endometriosis places on our individuals, families, schools and workplaces. We have seen the benefits to the community from awareness campaigns for diseases with similar incidence levels in the past. It was only about 30 years ago that diseases like breast cancer were just not discussed.
We are here today as an Alliance advocating for a nationally funded public awareness campaign. With so many women and girls affect by endometriosis, we need to raise awareness in homes, schools, workplaces and our diverse communities.
Greater awareness is the beginning and will lead to improved understanding, earlier diagnosis and better treatment and support for 1 in10 women.
The formation of the Parliamentary Friends of Endometriosis Awareness and recent speeches in Parliament by the Member for Canberra Gai Brodtmann, Member for Forrest Nola Marino, Member for Boothby Nicolle Flint, The Honourble Members, Justine Keay, Dr John McVeigh, Maria Vamvakinou have helped to raise awareness. This is a marvellous beginning.
But to make our dream come true we need your support as the Friends of Endometriosis in the Parliament of Australia to become champions of Australian women with endometriosis by funding a public awareness campaign to reach all communities to raise awareness about endometriosis and the 1 in10 women affected.
Together we have started the conversation, we need your help to bring an end to the silence on endometriosis.