This post has been a long time coming, and is definitely the most important post I have written so far.

What is Lipoedema?

Firstly a few facts about Lipoedema.  Lipoedema (or Lipedema in US spelling) is a fat or adipose disease that results in fatty enlargement of the legs.  Lipo meaning fat, edema meaning fluid accumulation.  It is genetic and hereditory.  In New Zealand it is largely unheard of, even though studies suggest it affects 11% of the female population.  Lipoedema is not just aesthetic, many sufferers have debilitating pain either on pressure or due to damage caused by edema and abnormal fat i.e constant pain.  There is increased vascular fragility (easy bruising is one of the symptoms) and Lipoedema does not generally respond to weight loss or calorie restriction.  In fact many Women have developed eating disorders as their bodies have spiraled out of control and have ended up emaciated on top, but their legs were still very heavy and abnormally large.  The edema component of Lipoedema is non pitting and feet are excluded.  Of women with lymphedema, estimates are that or 8% to 17% have lipoedema as well.  For 30% of sufferers arms are also affected (mine are and I also have secondary lymphedema in one arm).  Many Women report Lipoedema in other areas of their body as the disease progresses, including their abdomens.  The skin in affected areas is often very cold to the touch.

Today’s blog is not to detail Lipoedema as a condition, but to share some of my experience.  I will post links at the end if you would like to know more and will suggest some support groups.  Please also feel free to message me with any questions.

My Story

The reason I have procrastinated for so long with writing this post is that there is a deep sense of shame that comes with having a condition or disease that completely distorts your body image.  We live in a world that is body image obsessed.  This shame very nearly stopped me from following my dreams and life path to becoming a Nutritionist and natural health practitioner.  It has also really challenged my perspectives on health. I know there is power in sharing my story and that it may give some people answers. Others may resonate with their own experience of a totally different condition.

There is so much not known about Lipoedema, but we do know there is a hormonal connection.  For many, myself included Lipoedema showed up at puberty.  For some it won’t show up until Menopause of post child birth.  Some Women even report that it showed up for them after significant distressing life events.  At around 12 years of age people were commenting on my legs. So I covered them up and hid them away.  I noticed that no matter how active I was, my legs were not toned like my friends.  I had good muscle mass, but you could not see it due to swelling.  I was very active at this age and was not overweight elsewhere on my body.  I walked everywhere and was obsessed with roller blading spending most of my waking day moving.  My arms were affected from an early age also.  I had ‘bingo wings’ as a teenager and assumed I was weak and doing something wrong.  I felt this way even though my toned friends ate and exercised the same as me.  Kids and immature adults used it against me and it hurt.

I did not know about Lipoedema and no one around me did either.  I did not cause this to happen to myself, it is not my fault.  There is nothing that I did to myself to cause this, yet I have been shamed for this and have owned that shame and even shamed myself.  I know there is power in my story.  Power for myself and others.  If you own something and accept it, then it can’t be used against you any longer.  I am reclaiming my power.  Helping others is also more important to me then protecting my own pride. It is important to let go of that which you cannot control.  What I can control is how I approach health and lifestyle now I do have answers.  I have been through various stages since learning of this disease.  Frustration, anger, understanding and now acceptance.  It has taken some time for me to release the idea that I will find a cure or magic pill.  Management must be approached holistically.

I am happy to report however that since finding out about Lipoedema I have been able to stop progression (this is a progressive disease).  I have also been able to get a decent amount of improvement and I am not giving up on myself.  That is one of the dangers with this disease and a reason early intervention is of utmost importance.  Knowledge is power.  I will share more of this story in future but for now, if you know anyone that may benefit from this article could you very sensitively approach the situation? Maybe not tag them in social media posts but quietly email a link?   It is not an easy pill to swallow, and not everyone is ready to face it.  Sometimes it is best just to plant a seed and wait.  Yes there is much worse that you can have then Lipoedema but do not underestimate the affect that this disease has on peoples lives.

Feel free to tag all health professionals when shared via social media that you know as awareness is needed.

Reference for facts/figures – Karen Herbst – PHD, MD – Fat disorders research http://www.lipomadoc.org/lipedema.html

Suggested groups – Lipoedema Warriors New Zealand is a new NZ group on facebook.  Connect with other ladies to find out what support is available in your area.  You can ask for diagnosing doctors in various areas etc.  There is a larger international group also which is Lipoedema Warriors.  These are both groups for Women sufferers or therapists only.

Also please feel free to contact me if you would like a holistic individualised nutrition plan to support Lipoedema.  Along with Lipoedema I also have personal experience with thyroid disorder and other co morbidities and I can help, listen, coach and hold space for Women needing help with any disorder.

Picture used with permission from the Lipoedema Warriors support group.  It shows a variety of types and stages.  Early stage 1 can be harder to spot.