Lipoedema Awareness Month 2023 has a different flavour for me. It is the first year of me being on the Advisory Board of Lipoedema Australia, so I feel like I have a much larger responsibility to talk about it. I also feel the pressure to keep everything I say factual and accurate.
It’s been a big year for me and Lipoedema. At the beginning of May I took part in a planning weekend as part of the first ever Advisory Board appointed to assist the Board of Lipoedema Australia.
What an amazing two days. Hours and hours of planning about raising awareness with the public, with the medical fraternity and with government. Getting in front of government is the carrot – this is how we eventually get Medicare recognition. But it takes time and persistence.
The Awareness Month Campaign has been much more targeted and I’ve enjoyed watching how visible the Board has become. I particularly loved the video montage of us all answering the question If you had a magic wand to change one thing about Lipoedema what would it be and why? It’s very moving and I encourage you to watch it the whole way through, it’s only four and a half minutes long but gives a great idea of how lipoedema affects patients.
As part of Lipoedema Awareness Month 2023 I have organised a get-together on the Northern Beaches of Sydney. This is the third gathering I’ve organised and I plan to hold them every three months or so.
This time though, I have reached out to two of our local Members of Parliament, Zali Steggall and Sophie Scamps, and invited them to attend. I followed up with Zali at her monthly market stall last Sunday and she said her team would be looking at emails and diarising things. Fingers crossed she attends. Sophie responded to a post I made on the socials acknowledging how important it is to raise awareness as she has a friend with the disease. I haven’t had a definite response from either but who knows. Watch this space.
For some reason I woke on Thursday morning with a bee in my bonnet and I had the urge to make a video about the confusion brought about by the latest research confirming that, generally speaking, there is no lymphoedema in lipoedema. And this is true – multiple research papers show that the lymphatic system is intact and functioning well in patients with lipoedema. The issue arises when the researchers state that manual lymphatic drainage is not helpful for lipoedema as there is no lymphoedema so you don’t need to do it.
You can imagine how much confusion that creates. Just because there is not lymphoedema, that doesn’t mean there isn’t oedema/swelling. Here is what I had to say in my moment of frustration .
Here’s a link to a post I wrote about the difference between oedema, lymphoedema and lipoedema if you’d like a little more information.
I’m looking forward to seeing the rest of the Lipoedema Awareness Month 2023 posts being shared by Lipoedema Australia. And keep an eye on their website – it’s being upgraded and the new one will be launched soon.
As part of the Advisory Board we are also working on upgrading our patient and medical practitioner brochures, improving the information we are sharing to raise awareness.
What would you like to see more of about lipoedema in the media or in your medical practitioner’s waiting room?