Archives for posts with tag: Lipoedema Australia Support Society

I can’t tell you how impressed, excited and amazed I am with the wonderful ladies of the Lipoedema Australia Support Society (LASS).  They have once again crossed boundaries and have been featured on The Project on Channel 10.  The Project went to the second LASS conference last weekend and filmed there as well but didn’t feature that footage in the package, but they did interview Dr Ramin Shayan of the University of Melbourne, Australia.  He is the group leader of the Lymphatic and Regenerative Surgery Group at the O’Brien Institute and his focus is surgery for lymphatic conditions, including Lipoedema.

I will be working on a post about Lipoedema news at the Asia Pacific Conference I attended a week and a half ago, including information from Dr Shayan’s presentations and will hopefully have that ready later today.

Here’s the link.  Have tissues handy!

 

http://ntpages.com.au/lisahiggins

 

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The most commonly searched term on my blog is “lipoedema”.  There is little understanding out there of the condition and frustrated ladies take to the internet to see what they can find out for themselves, because there are precious few in the medical arena who have any understanding of the condition.

So I thought I’d write a blog on how you can get help – what I’ve found out over the last couple years as to what works and what doesn’t, keeping in mind of course that while one thing may work for you, it may not for someone else.  I’m not going to go into what lipoedema is today as I’ve written a blog on that before, here‘s a Wikipedia explanation.

The first place I send people is to LASS (Lipoedema Australia Support Society).  This is a group of fiercely strong women who are searching for answers and getting information out there in as many forms as possible.  This year a number of them did the unthinkable – they bared their bodies for photos to make posters to put in doctor’s surgeries (or anywhere else they felt it might raise awareness).  You have to understand that most of these courageous women have covered up for their entire lives.  They have a closed Facebook group that you can join and I’d strongly recommend this.  The group has many files with information on diets, treatments that women have tried, surgeons, therapists, compression, financial support available through the government, and much more. They are organising their second Lipoedema conference for June 2016, to be held in Melbourne.

Lipoedema ladies, photo courtesy LASS

Lipoedema ladies, photo courtesy LASS

I’ve learned (from the LASS FB page) that a Lymphoedema and Lipoedema Community Seminar is being held on the Gold Coast on the 10th September at the Beenleigh Distillery/Tavern, 114 Distillery Road Yatala, late notice I know, but if anyone is in the area you should check it out.

On to concrete things I’ve learnt.  Again and again I hear from various sources (including the patron of LASS and my lecturer, Prof Neil Piller) that water exercise is the BEST thing for lipoedema.  That could be as little as floating around in the water if your knees or hips can’t cope with too much more, walking in the water, swimming or doing water aerobics.

If you can’t get into the water, then walking is always good.  Or rebounding.  Or whatever exercise you are used to doing, the main thing is to keep your body moving and active as much as you are able within the constraints of the condition.

Diet.  Now here’s the thing.  There isn’t any one diet that has been proven to help, but there are many diets that have been tried with some success.  The RAD diet by Dr Karen Herbst seems to be very effective.  Prof Piller recommends an anti-inflammatory diet.  To me, they all seem to agree that eating a diet high in whole, unprocessed foods is going to be beneficial.

Treatment.  The most frustrating thing of all is the lack of treatment (other than of course the lack of diagnosis or belief that the condition exists).  Common sense tells us to keep up the exercise and watch the diet but what else has been proven to work?  Nothing.  But, most women do respond favourably to manual lymphatic drainage and compression (obviously if they can tolerate it).  Dry body brushing also seems to help.  There are  deep breathing exercises that have been proven to stimulate the lymphatic system (thank you Prof Piller for his research).  There has been discussion on vibration plates and Prof Piller has done some research and found that these can be beneficial if used on a very low setting for a short period of time.  Care must be taken with other pathologies such as weak knees or hips.

The Rolls Royce of treatment is WAL (water assisted liposuction).  The link is to a study published on PubMed.  This is a specialised form of liposuction which minimises the damage to the lymphatic system, uses local anaesthetic rather than a putting you completely under and harvests fat rather than general tissue.  There are a number of procedures over a few weeks and compression is worn afterwards to maximise the results.   Post operative recovery is excellent.  This treatment is not available in Australia yet but Germany is advanced and experienced in the procedure and the follow up recovery period.  German clinics and hospitals are at the forefront of lymphatic research and treatment.  The main form of liposuction used for lipoedema in Australia is called Tumescent Liposuction.

Where to from here?  That’s up to you.  If you haven’t been diagnosed yet, but suspect that you have lipoedema then I’d suggest finding a doctor, physiotherapist or massage therapist who can diagnose you.  Easier said than done.  There is a list of therapist and doctors on the LASS FB page that may be of assistance.  In Australia you can get a care plan to see a physiotherapist for five sessions that Medicare will subsidise.  Massage therapists are not covered by Medicare but most will be registered with private health funds which can offer rebates to help offset the costs.

I am more than happy to talk to anyone about options if you’d like to send me a message.  This condition is something I am passionate about and education is vital, there is not enough information available and it can be very confusing and overwhelming trying to sift through what is out there.

http://www.lisahiggins.ntpages.com.au

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On Saturday 15th March 2014 I attended the first Lipoedema Australia Support Society (LASS) Conference in Sydney.  This was a remarkable event on so many levels.

Firstly, LASS was set up by women who suffer from the condition Lipoedema as a support group, in order to share their stories of diagnosis (or non-diagnosis in most cases), treatment, diets, where to find clothing/shoes/boots that cater for the condition, practitioners who are open to learning about the condition and many other issues.  These women have to fight every step of the way to get their condition recognised and treated and they support each other on their journeys of understanding and acceptance.

Having said that, I need to point out that LASS has no funding.  And the members are not medically trained professionals who can give advice.  And yet, this is a powerful group of women.

Four ladies spent untold time organising this conference, contacting health professionals who came to talk at the conference at their own expense!  Without exception.  Have you ever heard of such a thing?  When they first started organising the event they had no idea how many people would be attending but the room catered for 50 … there was a waiting list.  Besides the committee ladies there were those who brought prizes for the raffles and most importantly, those who made amazing cakes.

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Gluten free, dairy free cupcakes

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Anniversary cake with the LASS logo, how very professional … and yummy

The first speaker was Dr Helen Mackie, who has worked at a variety of hospitals in Rehabilitation Medicine and is now in private practice at Mt Wilga Hospital in Hornsby, Dalcross Adventist Hospital and Sydney Adventist Hospital.  She is the Medical Advisor to the Australian Lymphology Association.  She spoke about surgical options for lipoedema, in particular about tumescent liposuction (here’s a link to the Wikipedia listing on tumescent liposuction).

Next we had a preview of Fat Legs and All, a puppet film created by Avril Lunken in consultation with LASS, to help raise awareness of lipoedema.  Avril  is an OT who usually creates a flyer for lymphoedema awareness month but took a very big leap out of her comfort zone this year, working with writers, puppeteers and musicians to create a visually stimulating, educational, short story.  Amazing job.

Dr Lyndall White then spoke about overcoming the emotional challenges of lipoedema.  Dr White is a Consultant Psychiatrist in private practice at Belmont Private Hospital.  She talked about PERMA – Positive emotion; Engagement; Relationships; Meaning and Achievement.  Most important, talk to you family and friends for support and reach out to a professional to help you come to terms with what is happening in your body.

Then the man who has it all … all the up-to-date scientific research into lymphology as well as a very cheeky sense of humour and an ability to speak without taking breath … Prof Neil Piller, Director of the Lymphoedema Research Unit at Flinders University.  Neil is passionate about lymphology and is a patron for LASS.  He tirelessly educates about lymphoedema worldwide and is very generous with his time.  The take home message (if I tried to summarise his talk I’d never finish this post) is … try and eat a Mediterranean diet – one rich in olive oil, coconut oil, avocado oil, red wine (after all, it does have Resveratrol), almonds, walnuts, fruits and vegetables and oily fish like salmon, tuna and herring.  And exercise as much as you possibly can.  He had us all up taking five deep breaths, extending our arms as far back behind us as we could go (I give this exercise as homework to my lymphatic clients) to stimulate the lymphatic system.  He recommended swimming, yoga, tai chi but also any activity that your body is comfortable with, so if you like running and it doesn’t cause you pain – then run!  I know the running comment was of particular comfort to a number of women who enjoy running but have been told they should not do it and so were in two minds.

Next up was Kristin Osborn, owner and therapist at Newcastle Lymphoedema Clinic, also a sufferer of lipoedema.  She was wearing a fab tee-shirt with “Hippy Lippy Lady” on it, which is the name of the Lipoedema Awareness Campaign she has created.  She spoke about the Reid Sleeve Compression Garments, the only garments recommended for lipoedema patients (I’ll be looking more into these, that’s for sure).  She has set up a seven step program to treat her clients; anatomy education, products, handy hints & tips, infection control, safe and effective exercise, self massage and diet.  Her website has lots of great information you can take to your GP to try to educate them!  www.newlymphclinic.com.au

Following Kristin, we had Dr Susan Hodson – Medical Officer, Lymphoedema Services, Ballarat Health Services, Queen Elizabeth Centre, Ballarat.  She has written a paper called Lipoedema management: gaps in our knowledge.  At the start of her talk she jokingly introduced herself as “one of them”, as in … a medical practitioner.  But clearly she is different.  She also advocated exercise and diet in the management of lipoedema and spoke about some possible imbalances to look for, eg, check your thyroid function; cortisol levels (cortisol has been linked with weight gain which can play a part in lipoedema); and check the endocrine system as insulin production may be up (also a factor in weight gain).  Yet another passionate professional working to help ease the pain of lipoedema.

Lastly we had three members talk about their personal experiences getting diagnosis/treatment for their lipoedema.  It is not appropriate to relay those stories here but I’d just like to commend these women for their bravery in sharing experiences and photos with the gathering.

Here’s a link to a fantastic YouTube video entitled, You Mean It’s Not My Fault: Lipoedema, a Fat Disorder.  Well worth watching and sharing.

I’ve  barely scratched the surface of the day’s proceedings.  I met many courageous sufferers of lipoedema and some passionate practitioners (and some women who were both) and I just know that we can raise awareness of this condition.  We all just need to get talking.  Who’s with me?