Thousands of women affected by a debilitating condition causing ‘tree trunk’ legs may soon be offered liposuction by the NHS.
Financial watchdogs have been put in place to assess surgery for patients with lipedema, which causes abnormal amounts of fat to build up, usually around the hips, buttocks, legs and sometimes upper arms, leading to an extremely disproportionate appearance along with mobility problems, pain and risk of infection .
The condition usually develops in the teenage years and gets worse over time. In some women, their limbs become so large and heavy that they are forced to use a wheelchair.
Liposuction, in which a thin tube is inserted under the skin to break down and suck out fatty tissue, is commonly seen as a cosmetic procedure for people who want to lose weight quickly, but each year a small number of patients with severe lipedema are at risk of developing it. the NHS on medical grounds.
Now health chiefs are looking at whether it would be cost-effective to give it to younger lipedema patients, and at an earlier stage, to prevent more serious problems as they age.
Thousands of women affected by lipedema, which causes ‘tree trunk’ legs, may soon be offered liposuction by the NHS. Pictured: Emily Kearney, 32, suffered from lipedema during her teens. She has undergone four separate liposuction procedures, removing 55 pounds or 26 liters of fat. She can be seen above before (left) and after the procedures
A woman with lipedema 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 at the top but a size 14 at the bottom.
The horse groomer from Wendover, Buckinghamshire, suffered from the condition during her teenage years, but was wrongly told by doctors that she just needed to lose weight.
She has now had four separate procedures on her legs, stomach and arms, removing a total of 55 lb or 26 liters of fat.
“I’ve been in pain all my life and felt self-conscious,” Emily said.
“My legs had no shape – they just went straight up and down, like logs, and I knew the condition was only getting worse.
“I realized at some point that I wouldn’t be able to ride my horse anymore, so I decided I had to do something.
‘I feel like a different person now. I’m not perfect at all, I have loose skin and there are a few bumps and bumps, but the pain is gone and I can wear the clothes I want.”
Lipedema is thought to affect one in ten women to varying degrees of severity.
While it’s not entirely clear why it occurs, it’s believed to be at least partially related to the female sex hormone estrogen, as it rarely, if ever, affects men.
There is also a genetic component. The condition runs in families in 60% of cases.
Problems often start in adolescence, but unlike normal weight gain, the fat continues to build up over time and does not respond to diet or exercise.
In addition to psychological problems, patients also suffer from fatigue from carrying large amounts of excess weight.
Before undergoing surgery, Emily Kearney, 32, was a slim size eight at the top but a size 14 at the bottom. Above: Emily in hospital with her surgeon after her procedure, which she had in Germany
In lipedema, the legs or arms enlarge while the hands and feet maintain a normal size, unlike lifestyle-related obesity which also affects the hands and feet.
In the early stages of lipedema, the fat also feels extremely soft.
But despite these features, even specialists in limb and circulatory problems can not notice it.
In a survey of counselors, less than half were able to correctly identify the disease from a written description.
Lipedema can also be confused with an even more common condition of a limb – lymphedema, which is swelling of the legs caused by fluid buildup rather than fat.
To complicate matters, women with lipedema can also develop lymphedema at the same time.
Treatments for lipedema are similar to those for lymphedema: compression stockings and manual lymphatic drainage – a medically assisted type of massage that stimulates circulation in the extremities, reducing fluid retention.
However, the only treatment that can have a profound effect on lipedema is liposuction.
Studies have shown that it not only reduces the size of the affected limbs, but in 90 percent of cases vastly improves mobility and reduces pain and discomfort, significantly improving the quality of life for patients.
Cosmetic liposuction is often done under local anesthesia and sedation, and involves removing smaller amounts of fat — up to 12 lb or six liters — to contour the body.
Larger amounts, about 30 lb or 15 liters, can be removed under general anaesthetic, but the more removed at one time, the greater the risk of complications.
These include infections, bleeding, fluid buildup, and potentially fatal heart and circulatory problems.
For this reason, lipedema patients may be offered a series of surgeries rather than a single session.
Afterwards, patients can suffer from skin slackening, irregularities and asymmetry.
At this time, there is not enough data to say whether the abnormal fat tissue may come back, necessitating further surgery later.
But specialist nurse Mary Warrilow, of the charity Lipoedema UK, said: ‘I’ve seen firsthand what transformative liposuction is – nothing else comes close.
‘Patients live with pain and heaviness in the legs. Things we take for granted, like sitting on the floor to play with children, or buying clothes that fit the larger parts of the body, can be impossible.
And many people have suffered for decades before they even received a diagnosis.
‘At the moment there are relatively few people who can afford liposuction. I know women who have re-locked their homes, they are so desperate.
‘If it were available on the NHS it would make such a difference to so many lives.’
Emily has had worsening problems since childhood and was diagnosed in 2016 at the age of 27.
Coincidentally, she had seen a new GP who happened to watch a television program about lipedema the day before and promptly referred her to a specialist.
She said, “I was nine when my mother started asking doctors if there was something wrong with me.
‘Each time the answer was: lose weight; it was my own fault; I had to eat less. I’ve tried every diet under the sun and it made no difference.
“My legs hurt and at times it almost felt like the skin was bruised and split.
“When I was told I had lipedema, it was a relief – I’d always known something was wrong.”
Emily started researching online and booked 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 pounds of fat was removed from her lower legs.
Subsequent surgeries took 17 lb from her thighs and abdomen, 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 subsistence.
Emily said, “I’m lucky. I raised the money by running a sponsored half marathon, my parents helped, and so did an aunt.
They were great. The recovery was quite brutal. I was black and blue with bruises, and I kept passing out.
“But after a week I felt normal again. After surgery you have to wear permanent compression garments for a month, but I was used to wearing that sort of thing anyway.
I still wear them because it only helps me feel supported. I wasn’t looking for a perfect beach body, I just wanted to feel normal, and now I do.’
For more information visit lipoedema.co.uk and talklipoedema.org