The distressing condition that doctors dismiss as women being ‘pear-shaped’

Teresa Sanderson smiles wistfully as she looks at photos of herself as a young girl: an “elfin” six-year-old with slender legs. But in a few months it would be a different story.

“Literally, in two pictures (one from 1969 and the other from 1970) you wouldn't say I'm the same person,” she says. 'My legs were suddenly huge.'

In six months she had become a 'blob with tree trunk legs'.

“The weight piled on even though I was eating no different than my family,” says Teresa, now 60, a former civil servant who lives in Somerset. 'The heaviest weight was on my legs. My friends had spindly kid legs, but mine were huge.”

This was not 'just' because she was overweight, as doctors kept telling her.

Teresa even had lipedema, in which fat forms abnormal deposits under the skin, usually around the thighs, causing a pronounced lumpy effect and significantly larger legs.

It can also lead to disproportionate accumulation of fat in other parts of the body, such as the knees, calves and upper arms. It is also not weight-related, as people at a healthy weight can also develop it.

Last month the Mail reported how Brazilian model and influencer Luana Andrade died after having liposuction to treat lipedema that had appeared on her knees as a teenager.

The 29-year-old suffered blood clots in her lungs and suffered a fatal cardiac arrest during the procedure. Her mother, Luciana, later said that the condition had caused Luana physical discomfort and affected her work as a model.

It is not known exactly why lipedema develops, but people with the condition have an excessive number of fat cells in the affected areas, as well as a build-up of fluid in those cells. The affected areas often feel soft and doughy, feel more tender and bruise more easily.

Lipedema is usually a 'progressive condition'; it usually starts with heavier, dimpled thighs in the teenage years (with a smaller upper body – sometimes described as a 'pear shape'), but becomes increasingly apparent over time.

Many women end up becoming obese. 'Lipoedema limits their mobility,' says Dr Dennis Wolf, an aesthetic doctor in London who specializes in treating the condition. “They can then become depressed and self-conscious, and it becomes a downward spiral.”

Lipoedema only affects women – an estimated 10 per cent of adult women in Britain are affected – and is associated with hormonal changes during puberty, pregnancy, the menopause or taking the pill. Lipedema sometimes also runs in families. Despite the numbers affected, many women have never heard of the condition and assume they are overweight or have cellulite. Likewise, experts say, many primary care physicians are unfamiliar with the condition.

“Lipoedema has only been recognized in the medical community for about ten years,” says Dr. Wolf. 'Women are often 'fobbed off', with GPs saying: 'You just have big legs' and 'Look at your mother, she's the same'.'

This was Teresa's experience.

Her condition worsened after the age of 16, when she took comfort in the unexpected death of her mother.

“As a teenager I had a size 12 top and size 18 bottoms,” she says. 'When I was in my late twenties, I was a size 34.

'I reacted badly to insect bites, causing boils the size of saucers on my legs, which were made worse by the friction of them rubbing against each other.

“I also had unexplained bruises,” she recalls. 'I was told lack of exercise was the problem, but I knew it wasn't. I did aerobics at lunchtime and walked to and from work, a round trip of about seven miles a day.'

Teresa tried dieting, but while she sometimes lost weight from the rest of her body (she once lost a remarkable 7), her legs stayed the same — and got bigger as the years went by. 'When I was forty, I had to use a walking stick because my legs were so big and sore. I felt like I was going crazy.'

Because she couldn't walk properly at work, she was fired in her mid-40s.

But it wasn't until 2012, when she was referred to a wound clinic with a cat scratch that wouldn't heal, that her condition was recognised. She was 49 at the time.

Teresa recalls: 'I was lucky enough to see a wonderful nurse who looked at my legs, which were big, covered in sores and bruises, and said, 'You have lipedema.'

'I had never heard of it.'

Part of the problem for women like Teresa is that there is no diagnostic test “that can confirm or refute the condition,” says Dr. Wolf. Instead, it is based on careful clinical physical examination and takes into account a number of factors, including family history.

A further complication is that lipedema is often confused with lymphedema, a condition in which disruption of the lymphatic system (which drains excess fluid from the body) causes swelling in the arms and legs.

An important difference is that patients with lipedema have symmetrical symptoms (that is, they affect both sides equally), while symptoms of lymphedema typically occur on only one side and involve swelling of the entire leg or arm ( including feet and hands).

But both conditions are treated in a similar way, says Dr Semiya Aziz, a GP from London. “The main focus of treatment is to manage the symptoms, either with conservative means to prevent them from getting worse or, as a last resort, through surgical means,” she says.

Avoiding weight gain can help patients with lipedema, she says, “as extra weight can worsen limb swelling caused by fat.”

But diet and exercise usually won't help limbs already affected by lipedema. 'This is because the fat cells under the skin of the legs – for reasons that are not yet fully understood – retain fluid and do not release it into the general circulation,' explains Constantinos Kyriakides, a vascular surgeon at St. Bartholomew's Hospital in London. .

He adds that if people with lipedema lose weight, it will happen through the upper body, but “nothing changes from the waist down.”

Both weight loss and compression garments are recommended as treatments by the National Institute for Health and Care Excellence (NICE), as is massage to help reduce swelling.

In rare and severe cases, liposuction may be prescribed, in accordance with NICE guidelines, but this is after other treatments have failed 'and there are long waiting times', says Dr Aziz.

But the NICE guidelines also emphasize that liposuction carries the risk of causing blood clots, fluid in the lungs or a reaction to the anaesthetic.

Mr Kyriakides warns against surgical procedures, as some methods can worsen symptoms. This is because large tubes are inserted into deep tissues to suck out a lot of fat, which “can damage lymphatic drainage from the leg and cause lymphedema,” he says.

Research is underway at University College London to identify the differences between lipedema fat and normal fat, says Dr. Wolf. He adds, “Once we find that difference, we can make something that blocks it.”

Teresa, meanwhile, says her legs are the worst they have ever been, and she has now exhausted NHS treatments.

Although she has retrained and now teaches yoga, she struggles to make ends meet. Outings must be well planned: 'Is there parking available? Is there a place to sit along the way?

'It's a cruel situation. It's not just about having 'thick legs'. It destroys your quality of life.”