Lymphoedema Information Day
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SAVE THE DATE for the next information day.
When? 4th Nov 2023What? LAA Brisbane Information DayWhere? Kedron Wavell Services Club ChermsideHow? In-person & Live-streamingWatch Lymphoedema Association Australia socials and webpage for more information as it becomes available.Information day prices are cheaper for LAA members, you also get seasonal Node Newsletters via email and access to past newsletters on the website.Join up and help add to the numbers in the community, if you have lymphoedema, at risk of it or treat people witn it or care for someone/people with it.
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I am interested to hear from those who've had severe Lymphoedema in one arm - ie extreme arm swelling including the hand - a buddy has this (extreme swelling) .... how do you address it? What works?
I remember a lady with 'elephantitis' in one leg, back in the 60s .... it was probably Lymphoedema tho .....1 -
I have had lymphoedmea for 14 years in my arm. There is a lot a person can do tho get the swelling down. But even better is to take action when it starts as you can slow the internal tissue damage as the fat and proteins 'kinda 'stagnant" in lymph fluid that is left to sit and the skin stretches like a balloon and that doesn't go back down. If it is left until it gets hard and fatty then that can't be fixed without surgery, but the fluid componet can be removed with special massage done in a sequential order and direction related to the persons needs.The best thing is to go to a lymphoedema therapist if they can.For assessment and to talk through the many options to get swelling down ( decongestive therapy - often a few weeks of daily multi layeded special short stretch bandaging done carefully and in a special way ) then followed by daily self cares of massage and medical compression. Large limbs and people with limited mobility many need velco wraps for compression.there are even softer low grade compression for night time or people who are immobile. there are pumps called sequential pneumatic compression pumps, that inflate and deflate and are like getting a massage.Lot of people do that for an hour every day at home .A therpsist can help you hire or buy ( they are $$$) , and teach a person how to do the self massage of empty the buckets - ie massage our neck.armpit etc before the pump/massage. Yes long term unmanaged lymphoedma is called elphanitis, there is also in 3rd word countries lymphoedmea filariasis casued by worms that get into the lymph system. Ther e is also a condition called lipodema which is different. There are many causes of lymphoedema and it can happen at birth when some lymph vessels just didn't develop or from an injury and in other parts of the body as well.But hygiene, skin care, massage , compression - swelling can be managed and should.No one needs to suffer. If left, it ends up effecting peoples ability to move around and causes all sorts of other problems. The smallest of infections can suddenly turn into the dangereous cellultis and need antibitics asap, as our body can't get the fresh germ fighting lympph fluid to the cut and be replaced due to its sluggisheness.Any red rash staight to gp or hospital.I have had hand swelling.It is harder to get under control but is possible and worth the effort.I have done several posts on it on my instagram and facebook page called Lymphoedema Lymphatics Stuff.Also i post in two aussie facebook groups (use the page search tool for hand etc )To address hand swelling - you have to address further up stream. Everything from neck massage and stretches, vibration, movements like shoulder roll and up the wall arm slides,tai chi- waving arms around ,deep belly breathing, heaps of clavical ,armpit ,neck and arm massage with hands and roller ball,(yes on the side the nodes were removed) . Our lympohatic system is a whole body system- so it intersects with digestion, blood, muscles, so hydration is really important too.No diuretics.Good quality medical grade graduated compression , fitted by a proffesional, washed and looked after carefully, replaced every 6mths. ( There are some compression garment subsidy schemes in each state of Aus.Listed on the ALA site. )Some people do kinesiotaping,Learning how and why i need to look after my really helps to motivate me.If i don't do it- my arm aches and will get fatty and heavy .I have had cellultis once and that was so scary.But the only way to prevent it is with diligent self care and keeping my lymphoedmea as 'good' as possible.Its worth it.I love watching webinars and meeting other lymphies.You can find a lymphoedema therapist near you using this tool, widen the km radius bigger then 5klm and add your postcode.this will give you a list of names to follow up .Telehelth video calls are fabulous for people who can't get out and about or are far away from capital cities. You can learn a lot in a discussion with someone who 'gets ' it.There are some in home services too.They are not the sdame as beauty lymphatic massage therpaists- they are people who often are already experienced physions. oTs who have done extra courses. Not all lymphoedema therapists are the same- if you find a good one its worth the travel.Please do to encourgae your friend to follow up.The sooner the better.A few weeks of very annoying bandaging usually get a heap of fluid out- and then it feels fabulous.Learn how to not let it fill up again as they bandage you daily.there are fancy single use bandgaes that can sometimes stay on for 3 days called coban, but there are many options depending on a multitude of variables.Hope that helps.Love your lymph.
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here is a overseas instagram video that shows decongestive therapy for lymphoedema at high speed on a lower leggreat to visualise and show swelling reduction.A picture is worth a 1000 words.hope the link works for you so you can see.
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Many thanks for that, ladies xx. She is more a friend of a friend and I've sent the link below to THAT friend, who knows more of her history & may be able to get her to check it out.
How long does the 'thinness' last? Is the strapping an ongoing thing once it is at a 'controllable' level? Maybe just a compression sleeve (like fire victims) maybe at night to 'keep it under control' after all that initial strapping?
Here is one ofvideos on the arm of an older lady (that I must admit it a bit bigger then my buddy's - but is very similar (as I've not seen it in the flesh, so to speak.). Her hand is very swollen and i could see under the long sleeve of her shirt, that her arm is too, tho not quite as bad as this lady's ....thelymphologist
https://www.instagram.com/reel/CretGRmgdbv/?utm_source=ig_web_button_share_sheet&igshid=MzRlODBiNWFlZA==
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How long it lasts depends on the individual. Days,weeks.But if they follow instructions it can stay down for years.Sadly lymphoedmea is for life ,it never goes away, just gets worse and worse unless we take action. The more action , the better it is. Its a choice and active daily participation in maintainace of the limb is required to stop it 'filling up agian'.Some people can get away with just wearing compression and som simple basic self massage and movements and skin care , but other have to do much more and choose to. Basic lymph flow means it can refill in 2 hours- as our body produces 8-12 liters of lymph every day that our body has to process, if there is one area thats not working then it gets stuck there.Some people i know do the decongestive therapy once a year bandaging and fibroitic softening intensive process. I been able to manage mine so i have never really had to do it because i was lucky to be taught from day 1 what to do- but it did take me years to really get a hang of it and i regulary check in with a l therapist when i notice changes or time to try something new and refine my methids. There are many options to try.Some people who have advanced lymphoedmea can sometimes have 'debulking surgery'- but they have to commit to doing a whole lot of wrapping before surgery and commit to daily compression and self cares afterwards.other wise its not worth them doing the surgery if a person isn't willling to do the work to keep the swelling down.Thats at Macquarie Uni in sydney ALERT.They do diagnosis and treatment plans if your friend of a friend is sydney based. But people come from other states to go there as they are so good. Then take their plan home for local help.yes i often get asked was my arm burnt- compression therapy firm sleeves etc is also used for wound healing- there ar e many types of special fabrics, for swelling it helps hold the skin firm and small and encourages the fluid to move up and out of the limb.otherwise our skin just stretches wider and thinner. I think everyone should wear oocompression - especially if they work and stand a lot of the time.Its also been proven to help prevent getting lymphoedmea- when used appropriatly and as part of an education program.Early stage lymphoedmea can even be reversed.Now we have special machine that can detect it before its even noticable- so that a person can start slef massage and movements and sleeve and stop it in its tracks.Most women having breast cancer surgery in NSW public hospitlas are getting pre surgery scans, and 3 mths (appprox) re scans for 2 years as ongoing research as a result of the PREVENT trail of something like 2000 women that proved it can reduce lympheodema.I wouldlln't wish it on anyone- but the sooner a person starts intervention the better.Just like cancer - catch it when its small.Know your risk.Know how to check for it.Your worth it.
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Lymphoedema Association Australia Public Information Day
Saturday 4 November 2023
8.30am - 3.30pm AEDT (Australian Eastern Daylight Time)
Hybrid event -Live streamed and also in person at Kedron-Wavell Club, 21 Kittyhawk Drive, Chermside QLD
Registration Fee:
In Person Attendance : LAA Member - $30.00 Non-Member - $60.00
Virtual Attendance: LAA Member - $20.00 Non-Member - $40.00
Program
8:30 am - Registration (Trade display & Morning Tea)
10:00am - Session 1
12: 30 - Trade Display & Lunch
1:30pm - Session 2
3:30pm - Close
Catering: Morning Tea, Lunch & Afternoon Tea Provided
Presenters:
Professor Sandi Hayes - Senior Research Fellow within Menzies Health Institute QLD, Griffith University
Dr Jen Sanderson - Physiotherapist and Lymphoedema Practitioner, PhD. Works in Brisbane and conducts research at Griffith University
More to be confirmed!
Register now.
Not a member of the LAA? Join before you register for the information day.
Become a member today ... and, once your membership is confirmed, save on your information day registration fee.
(Plus get Node News, information and savings on other LAA events. Annual membership lasts until 30 Jun 2024 )
Complete the online membership application form.
https://www.lymphaustralia.org.au/membership/become-a-member/
Membership types and annual membership fee
-General
An individual who supports the purposes of LAA, who may have lived experience; be a carer/friend; or health professional in the field of care $40.00
-Concession
An individual with a valid concession card who supports the purposes of LAA, who may have lived experience; be a carer/friend; or health professional. $30
Please note, the membership fee includes GST.
The membership year is from 1 July to 30 June.
Should you experience accessibility issues with the online membership application form, please contact the Association for assistance. Contact Phone 1300 852 850 Contact Email admin@lymphaustralia.org.au
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Whatcha doing next Saturday 4th Nov?I hope you will be watching the live stream of the Lymphoedema Association Australia Information day, and enjoying the speedy,easy learning, lots of tips n tricks and background info that will help us better understand and manage our lymphoedema.These info days are fabulous. Curated and tailored information summarised and explained really well.One of the most helpful things I ever did for myself was to start going to them. They don't happen often,and live is more interesting, but it will also be recorded. So don't miss it either way. If your lucky enough to live anywhere near Brissy then do go in person for an even better value learning experience .𝗟𝘆𝗺𝗽𝗵𝗼𝗲𝗱𝗲𝗺𝗮 𝗣𝘂𝗯𝗹𝗶𝗰 𝗜𝗻𝗳𝗼𝗿𝗺𝗮𝘁𝗶𝗼𝗻 𝗗𝗮𝘆 , being held in QLD and live streamed and recorded.This is a great opportunity to learn, network with others and gain a greater understanding of lymphoedema and not to be missed.Live streamed 10 am Brisbane is 11 am Sydney time.8am Perth WA time.10.30 Adelaide SA ,11am Hobart TAS.
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Early diagnosis and early treatment is the best solution. Don’t just hope lymphoedema will sort itself. A good lymphoedema therapist is worth having, you may be able to get a referral for at least some subsidised sessions.
i have had lymphoedema in my arm for almost eleven years . I wear a compression sleeve but skip some days (never when it’s hot). I use massage (self and therapist). Exercises help too. I have managed to avoid my condition getting worse, my skin remains soft, and I have no heaviness or discomfort. Be lovely if it went away, but then again I have no evidence of cancer!!
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Thursday 7th March 20247.30-9pm AEDTZoom webinarContact Phone 1300 852 850Contact Email admin@lymphaustralia.org.auWho Can Register? AnyoneLAA Members Free.Non Members $20Not a member of the Lymphoedema Association Australia? Join now! for only $40.00 (General) or $30.00 (Concession)#lymphoedemaPresenters-@Dr Debbie Geyer- Sydney GP with primary lymphoedema herself .Medical Advisor to the Australasian Lymphology Association-Helen Eason Physiotherapy - Physiotherapist- oncology rehabilitation, lymphoedema and Lipoedema management Vic.-Hildegard Reul-Hirche- Founding member of ALA 1994, Senior physiotherapist with over 30 years of clinical experience treating lymphoedema as well as teaching & training other therapists. Research. Royal Brisbane and Women’s Hospital
FYI
@Mez_BCNA
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ALA GP UPDATE WEBINAR New advances in Lymphoedema Mapping, Detection and Mangement for GP'sThe increasing rates of cancer survivorship has led to GPs having to deal more and more with the sequelae of cancer surgery and adjuvant therapies in our patients. Lymphoedema is often a troubling consequence of such treatment. With new technology, the assessment and management of lymphoedema has changed.GPs have an important role to play in diagnosing and facilitating treatment for lymphoedema sufferers. Date: Wednesday 1st May 2024Time: 7.00 pm - 8.30 pm CST / 7.30 pm - 9.00 pm ESTHeld Onlinehttps://ala2024conference.com.au/gp-update
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New online peer support group for Aussies with lymphoedema.Apply to get zoom link by filling out the simple survey
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www.lymphaustralia.org.au
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