We need to talk about Lipoedema
Lipoedema. Have you heard of it? Probably not. I hadn't until one of my clients was diagnosed with the condition towards the end of last year and I needed to learn about it myself. Despite the relative anonymity of this condition, it affects around 1 in 10 women. That's an incredible number. You're virtually guaranteed to know women with the condition, you may even have it yourself. Though I am by no means an expert on lipoedema at all, I think it's very important that we start raising awareness about this condition and I wanted to write a blog post to share what I've learned about it. Please do get in touch if you want any of my sources or have any corrections or concerns about anything I’ve written!
So what is it? Lipoedema (spelt Lipedema in the US) is a disease characterised by a symmetrical buildup of fat cells in the legs and arms. As it progresses over time, it causes pain, swelling, and easy bruising. It may also affect the texture of the skin, looking similar to cellulite or like an 'orange peel' texture. These diseased fat cells are distorted and so the body cannot access the fat to use as energy, regardless of how little the individual is eating, or how much they are exercising. The heartbreaking thing is that so few people know about this condition, including most doctors and GPs (only 5% knew about and were diagnosing the condition before 2014), so women are regularly dismissed, patronised and simply told to lose weight when they go to the doctor.. It is also characterised by a small, perhaps disproportionately small waist and a slim face. It does not usually affect the feet or hands and so women with lipoedema may have a sort of cuff or fat pad by their ankles and wrists where the lipoedema cells stop. Once the disease has progressed significantly, many women are dismissed as obese or fat.
However, this is not obesity. It's not caused by eating too much or exercising too little, and failing to understand this can lead to sufferers developing severe eating disorders, depression and other mental health problems. Most people suffering with lipoedema do not even realise it themselves due to the fact that so little has been done to research, raise awareness or diagnose the condition. Again, I had never heard of it before last year and my client who is in her early 60s has been living with the condition since her teenage years without knowing - simply believing that she just had big legs.
There are a few things that have got me fired up to write a blog post about Lipoedema. Firstly, it seems absolutely imperative to me that women who have this condition are aware of it in order to avoid years of dieting, extreme exercise and desperation to try and shrink their bodies. It cannot be treated with diet or exercise as the diseased fat cells do not respond in the same way as healthy fat cells. That's not to say that eating well and exercising is futile, after all there are so many other reasons to exercise and eat nutritious food, however it is to say that the lipoedema fat on the legs or arms will not go away or shrink with diet or exercise.
It's not just the women who are suffering that need to have this knowledge either. As a PT, it makes me feel sick to think about the number of PTs around the country who are currently working with people with lipoedema yet have no idea about the condition. They may well be putting their clients on huge calorie deficits, making them exercise in ways that their bodies are not comfortable doing, and may also be making unhelpful or body shaming comments in an effort to 'motivate' and produce results that are never going to come. Lipoedma affects the muscle quality and structure too, as deposits of ectopic fat leads to progressive loss of muscle quality and fibrosis by cross-sectional area and force generation. Again, when at least 1 in 10 women have this condition, understanding how their bodies will work and react to exercise is fundamental yet absolutely nothing is taught or understood by Personal Trainers. I am currently doing my Level 4 Exercise Specialist qualification on obesity and diabetes and Lipoedema is obviously not mentioned.
Women who don't have the condition need to know about it too. Although I hear the refrain 'women support women', I regularly see more examples of women tearing other women apart and commenting on their body, appearance, beauty, life choices, etc. than I see women lifting others up. To think that millions of women with lipoedema are judged as being fat or obese and face little compassion from people around them makes me so sad. We must raise awareness and offer support and solidarity. A recent Love Island contestant, Shauna Phillips has done a fantastic job at raising awareness of Lipoedema having found out she suffered with the condition after she appeared on the TV show. She admitted crying to the show's therapist (I mean, the fact that this show even exists, let alone requires the contestants to have access to therapy is another issue entirely), about how fearful she was about comments regarding her 'fat legs', as well as feeling like the 'token fat girl' on the show. She admitted to struggling with an eating disorder and was working out frantically for 6 days a week but despite losing weight on her torso and upper body, her legs remained the same size. She did, as she feared, receive a lot of trolling and hate online about her legs during and after the show.
Secondly, it is important to get angry about this enormous example of gender inequality within the medical field. Were this a condition to affect 1 in 10 men, I'd be inclined to say that NICE (the National Institute for Health and Care Excellence) would have recognised the condition before this last month in 2022. It's not a new condition, the symptoms were first recognised and recorded in the 1940s, yet as with so many other aspects of women's-only health, the medical field is woefully and inadequately underfunded, patronising and dismissive. It boils my blood that women with lipoedema are misdiagnosed, body shamed and called obese by medical professionals.
This leads me into my third point which is that the only treatment for lipoedema at the moment is liposuction. This surgery, usually undertaken in a number of different rounds - up to 8 or 10 different surgeries over the course of a couple of years, has just been banned by NICE. Having not even recognised the condition until now, NICE have banned the surgeries which are the last resort and only hope for women with this disease who can afford to pay for it (we're talking tens of thousands of pounds as it is not covered by the NHS). Liposuction is not simply a cosmetic procedure to improve the aesthetic of the areas of the body affected, it sucks out all the diseased fat and this seems to stop the disease from coming back. It obviously drastically improves the quality of life for women affected and is the only hope for people with the condition as no other treatment exists. My PT client has already had one surgery and had another 6 or 7 to go and, as you can imagine, is absolutely devastated that her only hope of curing her body has been taken away from her in a knee-jerk reaction from NICE, who on the basis of very little evidence, have raised concerns about the safety of this treatment. They only acknowledged the condition even existed in the same month as banning the surgery! Instead of pledging immediate research and funding, NICE have said: 'evidence from a randomised controlled trial currently taking place in Germany could provide better evidence in support of the use of liposuction for the treatment of chronic lipoedema. NICE will review its guidance upon the publication of evidence from the German trial.'
Meanwhile, hundreds of women on the waiting lists for treatment, as well as all those in various stages of their liposuction journey have been completely abandoned. Surgeons cannot carry out these operations and women are expected to wait for what could be around 5 years, for a decision to be made. Many will resort to going abroad for treatment (as many who can't afford UK prices already do), however this is arguably far more unsafe as healthcare laws in countries such as Turkey, are not nearly as stringent as the UK. There was a feature on Women's Hour on Thursday morning that brought this issue to a larger audience, although the interviews did not, in my opinion, do justice to the severity of this decision on the physical and psychological health of the women affected. I hope that with the increasing awareness of the condition, NICE will find themselves under enough pressure to reverse their decision, or at least commit significant funding to researching it themselves, rather than waiting to see what other countries are doing.
So how to conclude? I hope this blog post has taught you something new today, or maybe validated your experience if you have lipoedema. I feel so strongly that we must raise awareness of something that affects 1 in 10 women, causing eating disorders, depression, hugely low confidence and poor body image. Doctors and medical professionals must be educated so as to be able to diagnose the condition early, rather than labelling patients as obese and prescribing weight loss. And we must all work harder to share compassionate, non-judgemental and kind about bodies, weight and appearance - our own, and others.
If you're concerned about Lipoedema or want to know more about it, I'd highly encourage you to use these following resources:
Lipoedema UK: https://www.lipoedema.co.uk
The Lipedema Foundation: Lipedema.org (US website)
NHS: https://www.nhs.uk/conditions/lipoedema/
If you think you may have lipoedema, please do visit your GP (and if they have never heard of it, ask them to look it up).