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Taking the plunge with lipoedema

Women wait decades for an accurate diagnosis of lipoedema. Earlier diagnosis is essential to prevent the condition progressing to lymphoedema, with its risk of life-threatening cellulitis.

Walking in water tones the legs without putting stress on the knee joints

Picture credit: Alamy

Women with lipoedema live with the condition for an average of 30 years before being diagnosed, according to a survey in 2014.

The survey of 240 patients by the charity Lipoedema UK found that lymphoedema nurse specialists were most likely to make the diagnosis.

Swollen limbs are a sign of both lipoedema and lymphoedema, but there are significant differences, says Christine Wise, a lymphoedema nurse specialist who works in private practice.

Lipoedema is an abnormal accumulation of fat in the body; the cause is unknown but there is believed to be a genetic component, says Ms Wise.

Fat is typically deposited in the lower body in both legs in a symmetrical way, but the arms can also be affected. Feet are not usually affected. The skin on the legs does not pit, but it can be tender and painful to the touch.

‘Lipoedema is not rare,’ says Ms Wise. ‘It affects about 15% of women, often starting at times of hormonal change such as puberty.’

Lymphoedema is the abnormal accumulation of fluid under the skin, which occurs when the lymphatic system gets damaged or obstructed. Unlike lipoedema, it affects men as well as women. It can be a side effect of cancer treatments. Swelling in the body is uneven and feet are usually affected. Pitting of the skin occurs, but is not painful. With lymphoedema there is a risk of developing cellulitis, which can be life threatening.

Lymphoedema is taken seriously because of its link to cancer treatment, suggests Denise Hardy, clinical nurse specialist and manager of the Kendal Lymphology Centre in Cumbria.

She says women with lipoedema are often ‘fobbed off’ when they seek medical help. ‘They are told they are obese and to lose weight. This causes huge distress as lipoedema does not respond to weight loss, so women blame themselves for their problem and feel very alone with it.’

Symptoms

Over time their legs can become gigantic and very painful with knee joints adversely affected. If the lipoedema is unchecked patients may develop lymphoedema.

‘All nurses need to be aware of lipoedema and to diagnose it as early as possible to manage it and stop it progressing,’ says Ms Hardy.

‘Ask the patient if they have tried to lose weight and whether it comes off the top part of the body but not the bottom part. There is never swelling in the feet initially and there is a “bracelet effect” at the ankle area. Ask whether the patient has painful skin that bruises easily and about family history.’

Patients should be advised to avoid excess weight gain and stay active, for example by swimming. Walking in water is especially beneficial because it does not put stress on the knee joints. Wearing compression garments up to the hips will support the legs and reduce the risk of lymphoedema, while manual lymphatic drainage can reduce pain and discomfort.

‘There is no cure for lipoedema at the moment but it can be controlled in various ways,’ says Ms Wise.

See www.lipoedema.co.uk for details of a new e-learning 30-minute course about lipoedema, provided by the Royal College of General Practitioners

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