2023 has been a whopper of a year for lipoedema in general and for me, in relation to lipoedema, in particular. Here is my lipoedema year in review.
Lipoedema Australia engaged a number of new board members to the general board, in addition to setting up an advisory board.
I am one of the four health professionals appointed to the advisory board and in early May we had a planning meeting with both boards present.
Sub-committees and working parties were formed and the output from this meeting has been nothing short of spectacular. Here’s a link to my blog on that weekend.
You can find out more information about Lipoedema Australia on their brand new website. There are updated photos and links to updated studies and events.
That’s two things already … a lipoedema photoshoot and a new website.
I’ve been involved, as part of the advisory board, in the re-writing of two publications – the Guide For Health Professionals and Information For Those Living With Lipoedema. Both are available on the website for download and printing to take to your health professional.
I attended an online module on PraxHub, called Demystifying Lipoedema: the urgent need for understanding this little-known and stigmatised disease. This class was designed to educate health professionals and was presented by our very own board member, Lucy Melicacn, and Assoc Prof Ramin Shayan. This presentation was funded and organised by Lipoedema Australia. Details available on the website.
This year I hosted three Northern Beaches Lipoedema get-togethers. I will continue to hold them every three months at Ruby Lane in Manly. These gatherings are an easy way to get to know some other local women with lipoedema. Let me know if you’d like details for the next event.
In early October, Lipoedema Australia had a stand at the FitHer Expo in Sydney. This was a two-day event on health and fitness for women. We spoke to hundreds of women (and a few men) about lipoedema and had 201 women answer a survey to gather Australian statistics on the incidence of lipoedema in the general population. Something we don’t think has been done in Australia before.
Also in October, Lipoedema Australia sent out a survey via its private FB group and over 1000 people responded! An infographic has been produced with the results and it is powerful reading. This will be taken along to meetings with Members of Parliament or any other official offices.
In late October, we had a stand at the four-day Wonca GP Conference in Sydney and spoke with hundreds of GPs over the four days. We also surveyed over 80 to find out how much they knew about lipoedema. Another first in Australia.
In November, Jen Bartlet, Chair of Lipoedema Australia, and I spoke with two MPs about the personal impact of a diagnosis of lipoedema. We took constituents with us to talk about their personal experiences with diagnosis, sourcing treatment and the expense of treating lipoedema. We met with Zali Steggall and Dr Sophie Scamps. We have asked for support for our campaign to seek funding from the government and to encourage them to mention lipoedema in Parliament to help raise awareness at a government level (amongst other things).
Did you know you can ask for a meeting with your local MP to talk about lipoedema (or any other concerns you have)? I strongly urge you to reach out to them as part of the awareness program, and who knows, Lipoedema Australia may be able to send a board member along to assist.
So much achieved in such a short space of time.
Next year will be all about the conference, which is being held in Melbourne from 21st-23rd June. More info on the Lipoedema Australia website.
What has your lipoedema year been like?
PS: Lipoedema Australia receives no funding from the government and relies on donations to produce all its information and for its attendance at conferences. If you’d like to donate, please go to the website.