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You might wonder why we’re talking about Lipoedema on the Wingz blog – well the reason we have Wingz in the first place is because Michelle Ellis, Wingz founder, has the condition and designed Wingz to cover her arms.
Of course, they’ve taken off as a fashion accessory in their own right, because let’s face it, they are rather awesome. But initially, Michelle designed them because she was fed up with trying to find clothes with sleeves and having to wear cardigans over the top of pretty outfits that inevitably came without any arm coverage.
So, what on earth is lipoedema?
Lipoedema is a chronic degenerative illness affecting mostly women. It’s thought that it’s caused by hormonal changes, which is why it’s extremely rare in men. It leads to a build-up of fat in the body in places like the tops of your arms, hips and legs, giving women who have it disproportionately large limbs as well as migraines, fatigue and extreme sensitivity.
Typically, many doctors think it’s a case of too many pies and treat it as obesity because of the fat build up. There’s not been enough research into the condition to convince many medics otherwise, and so many women are turned away and told to simply lose weight. This has zero effect on lipoedema because the sort of fat that builds up in people with lipoedema is an unusual type of fat that just won’t budge with diet and exercise.
Eating disorders and low self esteem
Lipoedema UK recently carried out a survey of 250 women with lipoedema and they found that 86 per cent of people with lipoedema suffer from low self-esteem because of it, while 95 per cent said that they found it hard to buy clothes.
50 per cent went as far as to say that their illness had negatively impacted their sex lives and worryingly, 45 per cent had gone on to develop eating disorders. Only five per cent of people who took part in the survey said that they had been accurately diagnosed by their GPs.
How can you treat lipoedema?
There really aren’t a lot of options for women with lipoedema, especially on the NHS. Some women get relief from their symptoms by using compression therapies like special tights that encourage blood flow and help prevent fluid retention. They can help with the pain and mobility problems, but they aren’t generally much help after a certain point.
Because lipoedema is thought of as being obesity related, which it’s not, the only real permanent treatment isn’t available on the NHS. The treatment is a very specialised type of liposuction that gets rid of all the diseased fat cells. Because the areas affected by lipoedema are usually large, you can imagine the time it takes, and the costs involved if you have to go private.
In reality, fully treating lipoedema can take up to ten treatments which rockets the cost upwards to many thousands of pounds, which isn’t the sort of money most people just have lying around. Lipoedema sufferers are routinely denied any help from the NHS because it’s wrongly thought of as being a cosmetic problem and because the excess fat puts them over any arbitrary BMI limit that’s deemed acceptable for surgery. It’s very unfair.
What happens if you DON’T treat it?
The big problem is that if it’s not treated, lipoedema can lead to immobility, as well as long term conditions like
- fertility problems and
Melissa Green, who’s now 34, was diagnosed in her early 20s and calls it a feminist issue because of the uphill battles she’s faced trying to get medical professionals to take her condition seriously – and the fact that most sufferers are female. Melissa was forced to leave her job in the film industry because of the illness. She’s raising awareness (and funds) via GoFundMe to £60,000 to fund her own surgery. She told the Independent;
“Living with constant pain, bullying, and judgement; the impact on your social life, the lack of confidence, not understanding what is happening to your body and why it is not responding to your efforts to make it smaller, and all of the conditions that are a direct result of lipoedema all affect you.”
You can read her article for the Independent here
Another sufferer, Lisa Muckle, told Metro that she was so desperate to sort her lipoedema out that she was using her entire divorce settlement of £22,000 on two operations to remove 17 pints of fat. Lisa said, like many sufferers, she’d tried every diet and exercise regime possible to try and get rid of the fat from her legs, hips, bottom and feet, but nothing works.
For more information about lipoedema, check out Lipoedema Ladies