August 2022

Welcome to issue #9 of Lipoedema Matters, a monthly newsletter created by Lipoedema Surgical Solution and Dr Chris Lekich.  

Artwork by Anna Maria Matziorinis from @healinglipedema

Neuroscientist Anna from @HealingLipedema is on a mission to empower others to live a whole and loving life with Lipoedema

Neuroscientist and certified nutrition coach Anna Maria Matziorinis was first diagnosed with stage 2 Lipoedema at age thirty.  Based in Bergen, Norway, Anna shared with us how science, art and self-love has taken her on a journey of self acceptance and how she hopes to inspire others to do the same.

I work in neuroscience research, in the area of neurodegenerative disease. I would not consider myself an artist, but I do love art and have used art to move and inspire me when I’ve needed help and inspiration. I feel artistry has healing properties and I encourage myself and others to use artistic means of expression as a healing method.  My work centres around helping the scientific community find non-invasive treatments for neurodegenerative disease, whether this has been for schizophrenia or Alzheimer’s research, I am very passionate about finding treatments that can alleviate pain and increase quality of life for others.  The art and messages that I create are an extension of that, as I feel it can help to inspire and calm the hearts of many of us who suffer with Lipoedema. I hope that my messages act as a balm to the soul and allow for a momentary contemplation of self-love to inspire healing and relief.

I was diagnosed with Lipoedema in Bergen, Norway, at a surgical clinic in January 2019. Until that point, I did not know that this was an actual illness. Although I was not prepared to take on any surgical procedures, I was still thankful to have had a professional diagnose me, I had suffered in silence until I was finally diagnosed at age 30.

Norway seems to have more understanding of Lipoedema than Canada, where I am from originally.  I am currently a member of the Norsk Lymfødem- og lipødemforbund (NLLF) which is a society for women with Lipoedema and Lymphedema in Norway.  Currently, some researchers in Bergen are conducting a clinical trial, and it seems there are hopes to learn more about the disease and possibly offer surgeries for those affected in a cost-effective way.  Although there are some interesting advancements worldwide, it is my honest view that both Canada and Norway have not been very aware of Lipoedema until now. Norway is making some nice progress and I hope that it continues in such a positive trajectory.

I have had Lipoedema since I was a little child. It seemed to have presented quite early on, and as puberty hit, at least 50-70 lbs (22 - 32 kgs) crept up suddenly on my body. At the time this weight gain mostly affected my mental health and it caused me to feel very lonely. My gym teachers shamed me for my weight despite being an athlete in high school.  I was able to release a lot of weight during my early adulthood and it was rather sustainable. Unfortunately, I never let go of the Lipoedema shape and it caused me a lot of internal sadness and despair. I have now learned to accept myself as I am, and I am happier now that I have.  In terms of my stage and physicality, I have stage 2, type 4 Lipoedema. I have a lot of upper leg and butt fat, as well as on the arms, and the nodules seem to get a little harder as I progress.  

The way I realised something was wrong was that no matter how hard I worked out, and no matter how much I attended to my nutrition, the shape of the body did not change. I would be ostracised and made fun of by people because of it and it made me really upset. I felt that I should be able to overcome anything, but it seemed impossible. It has been difficult to have the confidence to wear certain types of clothing, which has been hard on my mental health. The last several years I have had to work on accepting myself as I am. I now wear clothing that I like despite my fears. It is not always easy though. Other than that, I would not say my lifestyle has been deeply impacted. If anything, my Lipoedema has become a “screening device” that allows me to see which people are kind and which are not. Unfortunately people with Lipoedema or any type of physical ailment can get made fun of and in some interesting ways, Lipoedema has been able to show me which people are worth keeping in my life.  I am of Greek descent and it is quite common to see women with similar body types. My paternal grandmother had what I suspect was Lipoedema, yet I was the only other family member in my large extended family to have the disease. She never progressed past stage 2, and so I feel that it will likely be similar for me.  I deal with arthritis in my feet and plantar fasciitis quite regularly. I also have pain in my upper thighs, lower back, and upper arms. Regulating my body weight has become increasingly difficult which has put more strain on my general health. I notice that I need to take more time to rest while walking, and consistent pain in my legs makes it difficult to engage in certain activities.  I give myself more breaks as a result and try to engage in daily practices that help my body feel good. This means that  my daily upkeep takes more time throughout the day, but has also inadvertently helped me to become consistent with healthful daily rituals.

I would urge women to seek professional assistance rather than harming themselves with negative mindsets and to feel into themselves what is the correct approach for them. I myself am not amenable to surgery and prefer conservative treatment. I am open in the future if my health requires it. At the moment, I find eating an anti-inflammatory diet, minding stress, engaging in consistent healthy exercise, and getting manual lymphatic drainage massages to be largely helpful at the moment.

Art and science has helped me to better understand my diagnosis. I can now scientifically understand why my weight has been difficult to lose, and that it is not an issue of willpower but of complex biological systems. I can use art, writing, and communication to help to disseminate research and helpful tips not only for myself but to others which is also helpful. I think it is a common feeling that women with Lipoedema want to help others get a diagnosis earlier rather than later, so that those women do not have to suffer in the dark. Together we can help each other through understanding and compassion, and I think art can do that. The most important thing is to use these resources to bridge the gap of loneliness and disconnection. We are not alone, and in this way, we can feel heard and seen through art, through the spoken word, and through interviews just like this.

My most important tip would be to really get to know yourself. Find those walls that you have built around yourself, especially those that keep you from really loving yourself to the core. Without that core relationship and core respect for yourself, healing of the mind will likely not occur. No surgery nor expensive procedure can heal a broken heart and a broken mind. This is why mental health management and the journey of self love is so important. This does not mean to abandon the procedures that will make you feel empowered and alleviate physical pain, but to not forget that your heart and mind can not undergo such a physical procedure. Their careful curation and love can transform the way you look at yourself for good and should not be overlooked. I am heavier than I ever was yet have more love and acceptance in my heart than ever before. That magic is also why Healing Lipoedema exists - so that in some subtle way I can help to show others that it is possible to accept yourself fully.

Anna frequently posts healing affirmations to her instagram page @healinglipedema and has art available to purchase through her Etsy store.  Anna says "The etsy shop is available to help increase awareness of Lipoedema and to provide people with positive healing affirmations that help to remind us of our ultimate goal of self healing. I believe Lipoedema women are physical manifestations of Goddesses, and I feel that my brand represents that. We are truly beautiful as we are."
Anna is also in the process of writing a book about navigating mental health while having a Lipoedema diagnosis and about the importance of self-acceptance and self-love in the healing process. More details are available on her website.  Anna says "Nutrition and exercise are important pillars, as are other procedures and healing modalities, however the mental and emotional pain engendered from this silent disease often can create deeper self-worth problems and may often be more debilitating than the physical aspects of the disease itself."
Go to Website
Lipoedema in the media
Lipoedema patient Rachael Brumley recently shared her story with 7 News, click here to read
Lipoedema Survey
Please help us raise awareness for Lipoedema and have it recognised as a condition by the Australian Government, by taking a moment to complete this survey.  Initial findings will be presented in August 2022 to Hon. Yvette Dath, Queensland Minister for Health and Ambulance, and data collection will continue for 12 months.  Please click here to complete the survey

Questions & Answers

Do you have a question about Lipoedema?  Reach out to us via our Facebook or Instagram pages, or email us here and our clinical team will do their best to answer!
This months question: 

What age does Lipoedema typically begin and what are the triggers?

LSS Answer:

Lipoedema is almost always triggered at puberty, however, some patients may not see changes until later in life due to triggers of pregnancy, menopause or other comorbidities.  Lipoedema is a progressive condition & will typically progress as a woman ages and goes through hormonal changes.  It will progress differently in different women and can depend on the age of onset – some women don’t report symptoms until menopause and others report having symptoms from pre-teen years.  Most patients feel they have had a predisposition to Lipoedema their whole life, based on the shape of their legs & ankles or associated symptoms such as swelling, even those with late onset.  While it is most likely Lipoedema will progress, it can be slowed through conservative management.  It’s important to realise that no matter how good conservative management is, hormonal triggers often worsen the condition.

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Do not be afraid to go your own way.  You know what is best for your body.  -@healinglipedema

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