Lipoedema UK and patient Janet Scott were recently featured in the Telegraph online having been contacted by a journalist after former Love Island star Shaughna Phillips openened up about her diagnosis. The Telegraph contacted Sharie Fetzer Chair of Lipoedema UK for information on the Lipoedema to help with their report on the painful and often misdiagnosed condition. The article which was published online is below.
Lipoedema: the little known condition that causes fat legs
23 October 2020 • 5:44pm Source – The Telegraph online
Growing up, 60-year-old Janet Scott had dreams of being a dancer. She was a regular at the local theatre, where she would longingly watch the performers dancing with their “lovely long legs”. But when she turned 16, Scott started to realise that her legs weren’t like the dancers – or in fact, like any of her friends. Unbeknown to Scott, she was in the early stages of Lipoedema, a condition which causes an abnormal build-up of fat in the legs and sometimes the arms. Sufferers often have a small waist with large hips and thighs, making clothes shopping difficult, and experience heaviness or discomfort in their legs. It’s diagnosed in four stages; one being mild and four being the most severe.
“I knew there was something wrong with my legs; they were really big, and they weren’t a normal shape. But my aunties and cousins all had similar legs, so I just assumed that was the shape I had inherited,” she says.
It wasn’t until her forties when Scott received the first inklings of a diagnosis. She was on holiday with a friend in Malta, who worked as a nurse treating Lymphoedema patients in a breast cancer unit. Lymphoedema is a long-term condition which causes swelling in the body’s tissue; it develops when the lymphatic system doesn’t work properly, and it can be caused by cancer treatment.
She pointed out to Scott that she might have Lipoedema, which was later confirmed after a visit to her GP. Scott was diagnosed with stage-three primary Lipoedema, and also Lymphoedema in her legs. She says she felt “utter relief”; after years of blaming herself, she finally had a name for her condition.
Research into Lipoedema is still in its early stages, and no one knows exactly how many women have it in the UK. Sharie Fetzer, Chair of Lipoedema UK, thinks there’s a “huge number of women” living with the condition, many of whom may have gone undiagnosed. “It’s a bit of a blind spot in the medical community; many women become skilled at hiding the areas they don’t want people to see,” she says.
In recent years, there have been efforts to move discussions about Lipoedema into the public eye. This week, the former Love Island star Shaughna Phillips revealed that she had undergone liposuction surgery to treat her stage-one Lipoedema. During the interview, Phillips said that she had to endure years of abuse from trolls over the size of her legs.
“Before I even went into Love Island you can block words that you don’t want to see and the first word I blocked was ‘legs’,” she told BBC Newsbeat. “I would always feel like my thighs and my calves there wasn’t much difference in size. I never really had a defined ankle. For years I’ve had constant numbness in my legs.”
One of the defining symptoms of Lipoedema is legs that are disproportionately bigger than the rest of your body. Fetzer explains that someone with the condition could be a size ten or 12 on top, but a size 16 – or more – in trousers. The constant numbness Phillips describes is also a symptom of the condition. In severe stages, the fat can feel painful to the touch, and the legs tend to bruise easily. Janet Scott has suffered with Lipoedema since she was 16.
Janet’s legs before her operation :
Unlike obesity, Lipoedema fat can’t be lost through diet and exercise. “In people with obesity, the weight usually collects around the abdomen; but in the early stages of Lipoedema, people often have small waists,” says Fetzer.
Sadly, the two conditions are often linked. Scott explains that she resorted to comfort eating to combat her growing insecurity about her body. As her legs grew “bigger and bigger”, she also had to give up her horse-riding hobby because it became too painful, and the boots didn’t fit her. “I was very depressed about how I looked. It got to the point where I thought: ‘sod it. I’ve got big legs so I’m going to eat to balance out the bottom half of my body.’ I relied on food to give me a high” she explains.
It’s still not certain what causes Lipoedema, although it’s believed to be genetic. It’s also far more common in women than men, leading many experts to speculate that it’s linked to an imbalance in female hormones.
Dr Puneet Gupta, a surgeon who regularly treats patients for Lipoedema, explains that, while a woman can develop the condition at any point in her life, there are four main trigger points: puberty, pregnancy, menopause and starting the contraceptive pill. “I see lots of girls who have clear worsening of the condition around these landmarks in their life,” he adds. Lipoedema tends to be progressive and worsen with age.
Aside from causing physical discomfort, Lipoedema can have a debilitating impact on the sufferer’s mental health. As Fetzer sees it, there are two aspects to the shame of Lipoedema. The first is finding out that you don’t look like everybody else; often, this paves the way for bullying.
“The sad thing is that as the condition progresses, and people get more hurtful remarks, they begin to disappear. You rarely see people with advanced Lipoedema out, because they can’t cope with the negative comments.”
Being dismissed after seeking help from a medical professional can also have a negative impact on sufferers, adds Fetzer. She explains that all too often, GPs will advise women to eat more healthily, or exercise more, rather than diagnosing the root of the problem: “Not being believed plays a major part in making women feel devalued. One of our main aims is to make sure every medical professional is aware of the condition, and able to accurately diagnose it.”
While nothing can truly cure Lipoedema, there are treatments out there to manage the condition; compression stockings being one. These work by supporting the limbs and reliving some of the discomfort, such as chafing, says Fetzer. She adds that they can prevent other conditions such as Edema (swelling in the body caused by infection or inflammation) and Lymphoedema, from developing. However, Dr Gupta says that the pressure created by the stockings can make the pain worse for some patients who already battle with aching limbs.
One other treatment is non-cosmetic liposuction, which both Phillips and Scott chose. A survey undertaken by Lipoedema UK in 2019 found that out of 236 women in the UK, 33% (78) had undergone or were booked in to have surgery to treat Lipoedema. It’s not currently available on the NHS.
However, both Fetzer and Dr Gupta explain that this isn’t a quick fix; the procedure should only be completed by a surgeon who is experienced at treating Lipoedema fat. Afterwards, it requires long-term lifestyle management. When done by an inexperienced surgeon, patients risk permanent damage to the lymphatic system.
Regular liposuction treatments that use lasers or ultrasound to break up fat cells aren’t as effective in treating Lipoedema, says Dr Gupta. Instead, he says that patients should seek out microcannula liposuction. This technique uses small instruments of around 2mm in thickness to try and “minimise trauma to the tissue” and protect the lymphatics. While recovery times vary, they tend to be around two weeks.
“When done properly, those areas tend not to grow out of proportion again; it provides some degree of immunity,” he says. “For those who have stage two or three Lipoedema, it can help their mobility and improve their quality of life.”
Scott knows this relief all too well. She was lucky enough to be in a financial position to pay for surgery, and in 2014 she underwent two liposuction operations to treat her Lipoedema. During the first, they removed ten litres of fat from her legs. Through a combination of careful diet and exercise, Scott says that her life has dramatically improved since the surgery. She’s joined a netball club, is able to do yoga and swims three times a week.“I couldn’t have done any of that before surgery; it feels like I’ve finally got my life back,” she says. “We need to continue opening up the conversation around Lipoedema, so more women don’t have to suffer in silence.”
For more info, visit the Lipoedema UK website
Lipoedema – an abnormal build-up of fat in the legs, and sometimes the arms. The US spelling is Lipedema
- Lymphoedema – swelling that generally occurs in the arms and legs. It’s often caused by damage to the lymph nodes. The US spelling is Lymphedema.
- Edema – the medical term for when parts of the body swell from infection or inflammation