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Lucy had come about swollen legs. “Look at them!” she commanded, gesticulating towards her outstretched lower limbs. There was distress in her voice and vehemence in her hand movements – it was as though she had discovered alien creatures inexplicably attached to her body. “It’s come on so suddenly. Have you even heard of lipoedema?”
The condition was first described in the 1940s but even today it is little known about by either doctors or patients. I first heard it mentioned only last year; I mentally thanked the colleague who had described a case to me. Lucy had evidently been primed by online forums to expect medical ignorance, and there was a palpable easing of tension when I said I knew the diagnosis she was worried about.
The most common cause of leg swelling is known simply as oedema, when tissues become waterlogged, frequently because of heart, liver or kidney problems. With oedema, pressure from an examining thumb will leave an indentation, but Lucy’s legs were “non-pitting”. That could be consistent with a different condition, though – lymphoedema, caused by obstruction of the lymphatic vessels draining tissue fluid from the limbs. But there was a cut-off to the swelling, just above Lucy’s ankles, and normal-looking feet below – impaired lymph drainage should affect the whole limb. Lipoedema, by contrast, has nothing to do with fluid: it is a pattern of fat deposition most commonly affecting the legs and less frequently the arms, but sparing the feet and hands.
It invariably affects women, and onset is frequently associated with puberty, pregnancy or the menopause – Lucy had just turned 50 – suggesting that hormonal changes may be a trigger. But it is a genetic condition, and I listened while Lucy described how she now realised all the women in her family had similarly shaped legs. Lipoedema can coexist with obesity but Lucy is a fitness fanatic: gym workouts and distance running have kept her in extremely trim shape. The sudden thickening of her legs beneath an otherwise svelte frame had come as a shock.
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Although my examination strongly suggested lipoedema, given that it was the first time I’d encountered a case clinically, I was perhaps overanxious. Lymphoedema, which has many features in common with it, could be a sign of a pelvic tumour. I ran various blood tests along with an ultrasound scan, but all was well.
If I expected Lucy to be pleased by the all-clear, I was mistaken: she was just as anguished when she attended for her follow-up. Lipoedematous legs feel heavy and cumbersome, and in severe cases they can impair mobility. Chaffing between distended thighs can generate soreness. But Lucy had no physical symptoms to speak of. By far the most troubling aspect for many patients is the impact on body image, and that was what Lucy was struggling with. Throughout her adult life she’d been used to having control over her weight and appearance; she felt her body was turning against her.
Everything about Lucy – the disbelief in her voice, the way she held my gaze with widened eyes – pleaded for a solution. But she had done her research; she knew there was nothing to be done. Lipoedema doesn’t respond to diet or exercise – if it did, she wouldn’t have developed it – and surgical techniques such as liposuction are ineffective, even harmful, because of the way the fat is dispersed within the tissues as opposed to being layered subcutaneously.
Lucy and I discussed the challenges our bodies can pose us as we age and change – and even managed a moment of laughter at the indignities we sometimes face. It seemed to help. Even though it wasn’t mentioned, I know her husband has been seriously ill; I suspect the stress she’s under at home made the lipoedema feel like the last straw. Often, all we have to offer patients is shared humanity. Commiseration and fellow feeling remain some of the most powerful medicines of all.
[Further reading: Our food portions are bigger than ever]
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