Louise’s Story
Celebrating Milestones
Before Lipoedema Australia was the national representative body for lipoedema, it began as small Facebook support group for women living with lipoedema. Since 2012, Lipoedema Australia has gone on to help thousands of people living with the disease through raising awareness, providing education to patients and medical professionals, and advocating for recognition of the disease within Australia.
Lipoedema Australia has had many successes including our biennial national conference, June Awareness Month, and fundraising for lipoedema research. Our closed Facebook group Lipoedema Australia (LASS), however, remains central to the organisation. The group provides individuals with a safe and supportive environment with which to share experiences, knowledge, and resources. Above all, the group empowers people with lipoedema by connecting them to a community that can offer them emotional support and acceptance.
Around 10 years after it’s introduction, the Lipoedema Australia / LASS Facebook group reached 5000 members. To commemorate this milestone, we interviewed one of the original members, Louise Mansfield. Louise is also a director and treasurer of the Lipoedema Australia board.
I’m the sole parent of a 17-year-old young man who is my everything in life. I am a partner in a small accounting firm and have just progressed to becoming a Fellow of CPA Australia, which is a great honour. I’m from rural NSW and moved to QLD just over 20 years ago and will never go back to those frosty mornings again!
Louise, tell us a bit about yourself…
When did you first notice your symptoms of lipoedema?
I noticed the changes in my legs during my teen years. It was very obvious because the top half of my body was always so small. I just put it down to that being my body type and had never thought it was a medical issue! It wasn’t until after my pregnancy that my lipoedema progressed so quickly and started to cause me to be in constant pain that I started to believe something was wrong.
How did you get diagnosed with lipoedema?
It was a terrible ordeal to get a diagnosis and if I weren’t such a pushy person who demanded answers, I’m sure I would never have gotten one. My GP was lovely and persevered with me to find answers. She sent me for ultrasounds and tried me on fluid tablets but neither helped, so she referred me to a vascular surgeon.
The vascular surgeon took one look at me and instantly diagnosed me with Lymphedema (wrong!) and was ready to send me on my way. I questioned him on how he was able to give a diagnosis with no scans, no tests, bloods, nothing. So, he sent me for a CT scan at a specialist centre.
The peculiar sight of my legs was like nothing any of the imaging professionals there had ever seen. I was the centre of attention with several medical professionals wanting to look and learn what this “mystery disease” might be. Thankfully, my case sparked their interest so they went researching to find what these symptoms might be and bingo! They found lipoedema to be the culprit!
I then returned to my vascular surgeon who finally had answers, but alas, no treatment plan and no hope for any kind of recovery. This left me devastated for some time and not being able to find any help or information anywhere was even more disheartening.
How did you find the LASS Facebook group?
After a few months of self-pity and feeling hopeless, I decided to do my own research and see if I could find fellow lipoedema sufferers to see if there was any hope of helping myself get through this.
I searched on Facebook and managed to find a UK group which was then called Lipoedema Ladies, before changing their name to Talk Lipoedema. I posted on their page looking for fellow Aussie’s with lipoedema in the hopes that I may be able to meet someone just like me. I wanted to set up a similar page specifically for Australians so we could share ideas on where to look for medical professionals, treatments, etc. There were two ladies in the group who were in Australia, and they told me that there was already an Australian support group and added me to it.
That’s how I came to be Member 9 of this tiny little group that had next to no activity until I posted “Please help” and started a whirlwind of conversation full of information and positivity from these beautiful supportive people.
Honestly, without the LASS page, I would never have gained the knowledge and contacts that I now have. It was so nice to just go on and see other people with “my legs!” I could post how I was feeling, and everyone was so loving and warm and quick to reassure me that they understood, and it was ok to have those days where you feel like you are drowning.
The knowledge of what lipoedema is and tricks of how to help ease the pain, etc, it was all priceless! That was where I first discovered that a physiotherapist was who I needed to search for next and, after discovering that some lymphoedema physiotherapists also had knowledge of lipoedema, I started looking for KNOWLEDGABLE professionals. I searched the ALA registry for therapists who might have a clue about lipoedema. That’s where I finally found my therapist. So, I called her and asked her if she knew what lipoedema was (not lymphoedema, but LIPOEDEMA). When her reply was yes and she started talking about it, I almost cried!!! I had finally found someone who knew what I was talking about. I finally felt validated!!!
Without LASS, I wouldn’t have had any of that knowledge or experiences and I will be forever grateful for those two ladies who brought me into the group. It’s an amazing feeling to know how many people we have helped along the way but, more than that, I finally felt that I wasn’t alone anymore.
Aside from the LASS Facebook group, where else do you find information and resources about lipoedema?
I have read countless articles where lipoedema was discovered by Allan and Hinze at the Mayo Institute, the ALA website, as well as information I have gathered from my physiotherapist. It would’ve been a much easier road to travel had LASS had all the resources it has now, but I guess we had to start somewhere.
I work hard to keep my lipoedema at bay. I religiously wear my compression stockings every day. I have a love hate relationship with compression because, as much as I hate having to wear them all the time, they provide so much relief from pain. Compression also makes my legs not look quite so bad as they do without it. I’ve worn compression almost every day for the past 12 years, so they are just part of who I am now, and I very rarely go without them.
I also see my physiotherapist once every 2 months for MLD and have an hour in the pneumatic pump. This helps to reduce the heavy weight of my legs and I feel so light and free afterwards, it’s an amazing feeling.
How do you manage your lipoedema?
Have you faced any obstacles in receiving treatment/support in relation to lipoedema?
Yes! Fighting the medical profession for answers and access to EDUCATED medical professionals who don’t just think I have concocted a “fake disease” to make myself feel better about being obese.
The cost of compression stockings and trips to the physiotherapist can also be a struggle. As is the time spent every morning fighting to get those stockings on. Also having to travel 45 mins to my nearest therapist and spending 2 hours in her office having fluid drained, measurements taken, etc. It all adds up and can be tough when you are supporting a child with zero financial, emotional, or physical support.
How did you come to join the board of Lipoedema Australia?
I had been a very active member of the group for a while when it was suggested that we make this official and become an incorporated association. By doing this, we hoped that we could work towards having lipoedema recognised by the general-public as well as the medical profession.
At the time, life was tough when it came to the stares of the unknowing public who simply assumed that we were all lazy junk food addicts who lived on the couch. It was even tougher when it came to medical professionals (who ought to know better) dismissing our diagnoses as not being a valid medical condition.
So, we became an incorporated association and opened our first bank account. Next came the task of dividing up the roles and, as I am a qualified accountant, the role of treasurer naturally fell in my lap and has been there ever since.
After setting up our bank account, the 6 people who volunteered to be on the board contributed $21 each (being a $1 joining fee and a $20 membership fee) to start of this incredible journey. I’m sure no one ever expected it to even last past the first year, let alone progress as far as we have come 10 years later!
What does Lipoedema Australia do?
Lipoedema Australia does many activities including educating and inspiring the medical profession as well as fellow patients. We hold very informative and valuable conferences which are of a global standard. These conferences not only provide valuable information, but also, a kind of kindred spirit to everyone who attends. We get to meet so many people living with the same struggles and coping with the same emotional hardships, that I’m sure everyone always returns home with new friendships and contacts and a whole load of useful tips and treatments to help them on their own journey.
What is your role on the board?
I am a director of Lipoedema Australia Ltd as well as the Treasurer. My role is mostly the management of the finances and monthly reporting to the board as well as preparing our financial statements for audit and reporting to the ACNC to maintain our charity status. I also help monitor the Facebook support page when time permits.
What do you enjoy most about being a board member?
I receive great satisfaction from helping others and sharing tips and experiences. I especially enjoy being able to put my accounting skills to good use. Knowing that I can provide my accounting knowledge and experience (an otherwise very expensive product) to our charity for free makes me feel incredibly valuable and appreciated.
We have worked very hard to obtain both nationwide as well as international recognition in being one of the leading lipoedema support groups.
We have organised 3 national conferences so far which are now even sought after by medical professionals! We have raised a huge amount of awareness with our lipoedema awareness campaigns, stemming from new articles, television appearances, our Facebook presence, and our patient and medical professional pamphlets, which we have been circulating now for years.
There was a time, just 10 years ago, where you could google lipoedema and only one article would pop up. Nowadays, images, articles and commentary pop up everywhere. I’d like to think that we played a big part in that.
What are some of the achievements of Lipoedema Australia?
What advice do you have for new members learning about lipoedema?
There is so much information on the page from all the informative files to the maps of each state where you can find other people in your area. Ask questions!!! Share experiences!!! Get involved.
If you have any questions, there will be someone on there who can answer or give their opinion. Don’t be scared of putting yourself out there. We constantly work so hard to make this a safe place free from judgement. This is not easy with a membership of over 5,000, so take advantage of it and ask all the hard questions that you can’t ask anyone else.
If you’re feeling discouraged, share that with us too, because I promise there will be a hundred people in there ready to pick you up and encourage you to keep trying. We are so much more than just a group of people with the same disorder, we are a type of family who understand. We are there to help through tough times and to celebrate the good times too.
What are your hopes for the future in relation to lipoedema care, recognition, and/or treatment?
International recognition! I want lipoedema to be a household name, to be able to say lipoedema and have everyone know exactly what I’m talking about. I want more healthcare support, so we are not continually having to put our hands in our pockets for expensive treatments to halt the progression of our lipoedema. But, most importantly, to find a cure, so no one will ever need to go through the pain, suffering and ridicule that we have had to go through.
June 2022
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