Thousands of women blighted by a disabling condition that causes ‘tree-trunk’ legs may soon be offered liposuction on the NHS.
Financial watchdogs are set to assess the operation for patients with lipoedema, which causes abnormal amounts of fat to build up, mostly around the hips, buttocks, legs and sometimes upper arms, leading to an extremely disproportionate appearance along with mobility problems, pain and risk of infections.
The condition usually develops in teenage years, and gets worse over time. In some women, their limbs grow so large and heavy that they are forced to use a wheelchair.
Liposuction, which involves a fine tube being inserted under the skin to break up and suck out fat tissue, is typically seen as a cosmetic procedure for people who want to slim down fast, but each year a small number of patients with severe lipoedema are offered it on the NHS on medical grounds.
Now health chiefs are looking at whether it would be cost-effective to give it to younger lipoedema patients, and at an earlier stage, to prevent more serious problems as they get older.
Thousands of women blighted by lipoedema, which causes ‘tree-trunk’ legs, may soon be offered liposuction on the NHS. Pictured: Emily Kearney, 32, suffered from lipoedema throughout her teens. She has had four separate liposuction procedures, with 55lb, or 26 litres, of fat removed. She is seen above before (left) and after the procedures
One woman with lipoedema who paid a total of £20,000 for liposuction called the procedure ‘life-changing’.
Before undergoing surgery, Emily Kearney, 32, was a slim size eight on top but a size 14 on the bottom.
The horse groomer from Wendover, Buckinghamshire, had suffered the condition throughout her teens but was wrongly told by doctors that she simply needed to lose weight.
She has now had four separate procedures on her legs, abdomen and arms, and a total of 55 lb, or 26 litres, of fat removed.
‘I’ve spent my life in pain and feeling self-conscious,’ said Emily.
‘My legs had no shape – they just went straight up and down, like tree trunks, and I knew the condition was only getting worse.
‘I realised at some point I’d be unable to ride my horse, so I decided I had to do something.
‘I feel like a different person now. I’m not perfect, by any stretch of the imagination – I have loose skin and there are a few lumps and bumps – but the pain has gone and I can wear the clothes I want to.’
Lipoedema is thought to affect one in ten women to varying degrees of severity.
Although it is not fully understood why it occurs, it’s believed to be at least partly linked to the female sex hormone oestrogen due to the fact that men are rarely, if ever, affected.
There is also a genetic component. In 60 per cent of cases, the condition runs in the family.
Problems often begin in adolescence, but unlike normal weight gain the fat continues to build up over time and does not respond to dieting or exercise.
Alongside psychological distress, patients also suffer fatigue due to carrying large amounts of excess weight.
Before undergoing surgery, Emily Kearney, 32, was a slim size eight on top but a size 14 on the bottom. Above: Emily in hospital with her surgeon after her procedure, which she had in Germany
With lipoedema the legs or arms get larger while the hands and feet remain a normal size, unlike lifestyle-related obesity which also affects the hands and feet.
In the earlier stages of lipoedema, the fat also feels extremely soft.
But despite these characteristics, even specialists in limb and circulation problems can fail to spot it.
In one survey of consultants, fewer than half were able to correctly recognise the disease from a written description.
Lipoedema can also be confused with an even more common limb condition – lymphoedema, which is a swelling of the legs caused by fluid build-up, rather than fat.
To complicate matters more, women with lipoedema can also suffer lymphoedema at the same time.
Treatments for lipoedema are similar to those for lymphoedema: compression stockings and manual lymphatic drainage – a medically backed type of massage that stimulates circulation in the limbs, helping to reduce fluid build-up.
However, the only treatment that can have a profound effect on lipoedema is liposuction.
Studies have shown it not only reduces the size of affected limbs, but in 90 per cent of cases it massively improves mobility and reduces pain and discomfort, significantly improving quality of life for sufferers.
Cosmetic liposuction is often done under local anaesthetic and sedation, and involves removing smaller amounts of fat – up to 12 lb, or six litres – in order to contour the body.
Larger amounts, roughly up to 30 lb or 15 litres, can be removed under general anaesthetic, however the more that’s removed in one sitting, the higher the risk of complications.
These include infections, bleeding, fluid build up and potential fatal heart and circulation problems.
For this reason, lipoedema patients may be offered a series of operations, rather than a single session.
Afterwards, patients may be left with skin laxity, uneven areas and asymmetry.
At present there isn’t enough data to say whether or not the abnormal fat tissue may come back, necessitating further operations later on.
However specialist nurse Mary Warrilow, of the charity Lipoedema UK, said: ‘I’ve seen first-hand how transformative liposuction is – nothing else comes close.
‘Patients live with pain and heaviness in the legs. Things we take for granted, such as getting down on the floor to play with children, or buying clothes to fit the larger areas of the body, can be impossible.
And many people have been suffering for decades before even getting a diagnosis.
‘At the moment, it’s relatively few who can afford to have liposuction. I know of women who have remortgaged their houses they’re so desperate.
‘If it was available on the NHS, it would make such a difference to so many lives.’
Having suffered worsening problems since childhood, Emily was diagnosed in 2016 at the age of 27.
By chance, she had seen a new GP who happened to have watched a television programme on lipoedema the day before and promptly referred her to a specialist.
She said: ‘I was nine when my mum began asking doctors if there was something the matter with me.
‘Every time the answer was: lose weight; it was my own fault; I needed to eat less. I tried every diet under the sun and it made no difference.
‘My legs would ache and sometimes it would feel almost as if the skin was bruised and splitting.
‘When I was told I had lipoedema, it was a relief – I’d always known something was wrong.’
Emily began researching online, and booked in for liposuction treatment with Dr Johanna Schreiber at the Med-Plast clinic in Berlin.
She underwent four procedures between February 2019 and February 2020. In the first, 17 lb of fat was removed from her lower legs.
In subsequent operations, 17 lb was taken from her thighs and tummy, 15 lb from the back of her legs, and just over 6 lb from her arms.
Each procedure cost her £5,000, including travel and accommodation.
Emily said: ‘I’m lucky. I raised the money by running a sponsored half marathon, my parents chipped in, and so did an auntie.
They were wonderful. The recovery was pretty brutal. I was black-and-blue from bruising, and I kept fainting.
‘But after a week I felt back to normal. You have to wear compression garments permanently for a month after the op, but I was used to wearing things like that anyway.
I still wear them, as it just helps me feel supported. I wasn’t after a beach-perfect body, I just wanted to feel normal, and now I do.’
For more information visit lipoedema.co.uk and talklipoedema.org
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