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Managing lipoedema in a primary care setting

Primary care
This painful condition is one all practice nurses should understand, writes Dirk Pilat

Lipoedema is a distinct, infrequently recognised disorder of adipose tissue that occurs almost exclusively in women. First described by Allan and Hines in 1940 as ‘a syndrome characterised by fat legs and orthostatic oedema’ (a choice of vocabulary that would be unacceptable today, but still has resonance in contemporary practice), it can cause massive, bilateral symmetrical enlargement of the lower and in some cases, the upper extremities.1 Affected individuals develop orthostatic oedema, pain across the legs, frequent bruising and often crippling joint pain. The disproportionate increase in leg circumference in relation to a slender torso cannot be reversed by physical exercise and diet, and the course is mostly progressive. Lipoedema is frequently misdiagnosed in primary and secondary care, and patients are regularly being told that they are overweight, triggering a never ending cycle of diets and exercising regimes, without visible improvement, causing significant psychological harm. Even when lipodema is diagnosed correctly, finding appropriate care in the UK is difficult due to variations in the referral pathways and geographical clinic availability.2

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