Yes I do know of those great organisations, and many more.Thanks.
No, no other LAA events planned for Melbourne as far as I know , as i explianed on reply to Zelda. Not enough volunteers. (Hence importance of getting as many peeps registered to the very rare live Sydney in person and /online event)
List of Lymphoedema Support groups, including an online zoom one, are on https://www.lymphaustralia.org.au/get-involved/support-groups-/
They have a calender of events https://www.lymphaustralia.org.au/events/calendar-of-events/
eg I have Sutherland /st george lymph group tommorow at Tradies Gymea.Our group does bi monthly , weekday afternoon because thats what suits us three regulars/coordinaters.
Some Previous LAA Lymphoedema Information Day multi speaker event recordings are available to buy in the online store. https://www.lymphaustralia.org.au/resources/online-shop/
There are several other members events which were recorded webinars, ( Feel good enabling patient self management,Myth busting, Orthopaedic surgery... ) , also newsletters and more, are all available in the LAA members section . Membership is only $40 per finacial year.Anyone can join. Consumers, carers, health professionals.
The more members - the more we can stand together and be counted and data/ numbers help a lot for advocacy with government bodies etc.
https://www.lymphaustralia.org.au/membership/become-a-member/
If i see any other new special Lymphie specific events that may be suitable for BCRL , i will pop them here as well as my socials .
ps Image as an example of LAA content, here is a screen shot from one of the 2024 presentations ,( which coincided with the ALA conference. )Cherly presented a heap of summaries from many research papers and was specific to 'at risk of lymphoedema ladies'. So was a little different to other content .
PSS ALERT annual March event is always a good one.
https://youtu.be/GBWq6rsB0hY?si=PJXfYeymCRT7qztL
Running these events sounds like managing my lymphoedema with compression - very expensive to put on and a lot of hard work.
I feel a little nonplussed at the though of being asked to pay to watch a 2024 webinar made by an association who describe their mission as 'To ensure people with lymphoedema get the information, treatment and support they need to live well regardless of where they live'.
I suppose it makes sense when it seems like absolutely everything related to lymphoedema costs more and more and more money. So far this month I have spent $180 on my rental pump, $180 on a physio appointment to get measured for more compression garments and $798 on two gloves that still haven't arrived, $95 for MLD and $170 for a off the shelf glove I hope will arrive while I wait for my mega bucks gloves to finally show up. Not to mention the three compression garments I recently returned as they turned my fingertips purple (measured for by my physio at yet another $180 appointment) and STILL have not received a refund for. More than $700 for those ones. The two sleeves I received through the garment scheme are great but are three months old and starting to show the wear and tear of daily use and washing.
Meanwhile my hand gets bigger and bigger and my chronic, ongoing, progressive condition doesn't even rate a mention in the Australian Burden of Disease Study published in 2024. GP's have zero training. The burden of this condition, both financial and medical, is placed squarely at the feet of the patient - self management. No one would suggest I self manage my breast cancer but when it comes to this you are on your own.
