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.
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?