What is lipoedema? The condition affecting one in 10 women

·4-min read
Shaughna Phillips suffers from lipoedema (Getty Images)
Shaughna Phillips suffers from lipoedema (Getty Images)

Former Love Island contestant Shaughna Phillips has opened up about her struggle with lipoedema in a bid to raise awareness of the condition.

Taking to Twitter on Monday 24 January, Phillips shared a picture of herself on holiday in Dubai in 2017, revealing that she was suffering from an eating disorder at the time.

She said the photograph is a “clear example of what lipoedema looks like”.

Recalling how the condition affected her life before she was diagnosed, Phillips said she was restricting her diet and excessively exercising in an attempt to make her legs look smaller.

“I was underweight. I was torturing myself in the gym. Yet my legs were getting bigger and bigger,” she said.

“Lipoedema has nothing to do with being overweight,” she said, adding that it is “so damaging to continue treating women as if it’s their fault”.

“How anyone can accuse sufferers of being lazy/fat is beyond me. It is a medical condition that women suffer with often in silence, often misdiagnosed.”

On its website, the NHS does not state how common lipoedema is, but it says that it can be painful and is more likely to affect women.

Lipoedema UK, a charity dedicated to research of the condition and helping those who suffer from it, predicts that it affects as many as 11 per cent of women.

What is Lipoedema?

Lipoedema is an abnormal build-up of fat in the legs, hips, buttocks and occasionally arms. It usually does not affect the feet or the hands.

The symptoms of lipoedema include swollen, heavy legs that are painful to touch and bruise easily.

The National Institute for Health and Care Excellence states that the accumulation of fat can also cause mobility issues and have a “profound effect” on quality of life.

Aside from the physical symptoms it can also cause people to feel anxious and depressed.

What is it caused by?

Lipoedema is not caused by being overweight, and people of a healthy weight can also be affected.

According to Lipoedema UK, the condition is “almost certainly a genetic inherited condition because there is often more than one family member affected”.

It can also sometimes skip a generation, but it is unclear why it is passed on to some family members and not others.

There is currently no gene testing available, but research into lipoedema and its associated genetics is currently underway at London’s St George’s Hospital.

On its website, the NHS states that it could also be caused by a change in hormones during puberty, pregnancy, when going through the menopause or when taking the contraceptive pill.

How does it affect those who suffer from it?

Aside from causing painful swelling, the condition can also take a toll on people’s mental health.

Additionally, as very little research around the condition has been done, it is frequently misdiagnosed as obesity or lymphoedema – a long-term condition affecting the lymphatic system that causes chronic swelling in the body’s tissues.

“Lack of diagnosis means that sufferers don’t get appropriate treatment or advice in order to prevent secondary health problems such as osteoarthritis, varicose veins, lymphoedema, and eating disorders developing,” Lipoedema UK said.

In a video posted to her YouTube account in February 2021, Phillips told viewers that the condition had severely affected her confidence, even when she was competing in the sixth series of Love Island.

“My heart breaks for myself. It was so bad. There were certain parts of my journey that really do, to this day, make me upset,” she said.

She recalled one episode, where the women were asked to take part in a “dirty dancing challenge” and Philips had to perform in a thigh-high swimsuit.

“We found out at lunchtime that day, and I cried from that point until when I walked out,” she said.

How is it treated?

There is currently no known cure for lipoedema, but there are some treatments available to help manage the symptoms.

Some lipoedema patients can have liposuction to reduce tissue bulk, pain, bruising and improve mobility.

Liposuction is a surgical procedure which removes fat from the body.

Compression therapy may also be recommended, which involves wearing compression garments on the affected limbs.

The therapy cannot change the size or shape of the limb but can improve pain and discomfort as it has anti-inflammatory effects on the fat tissue.

Philips underwent liposuction on her legs in September 2020. In an interview with MailOnline, she said the difference between her legs before and after is “amazing”.

“I do feel more confident now, but when I go out I do worry that people are thinking ‘Oh, her legs don’t look that different’. To me, they look completely different,” she said.

“When I look at old clips, the difference is amazing.”

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