What is Lipoedema?

Lipoedema is a chronic, connective adipose tissue disorder that almost exclusively affects women. It is characterised by a symmetrical, disproportionate distribution and build-up of abnormal fat. This mainly affects the hips, buttocks and legs, and sometimes the arms. The fat is different to ‘normal’ fat, and affected skin can therefore be uneven and nodular in texture. Heaviness, discomfort and pain in the affected areas are common symptoms. Lipoedema can impair mobility and normal day-to-day activities and wellbeing.

Lipoedema is currently diagnosed by its symptoms. For in-depth information about these symptoms and the causes of Lipoedema, click here. You can also find suggestions about how to manage Lipoedema, including the best exercises for Lipoedema, what you need to know about compression garments, and advice on weight management and nutrition.

A little-known condition

Lipoedema was first described in the 1940s by Allen and Hines, but it remains relatively little known even within the medical community. Lipoedema UK was founded in 2012 to try to change that. Our aim is to educate people (including doctors and healthcare professionals) about Lipoedema, to enable earlier diagnosis and treatment. Lipoedema UK is proud to be part of Lipedema World Alliance (LWA), which was founded in 2022 by an international group of healthcare professionals, researchers and patient associations with a similar goal – to increase understanding of the condition and its appropriate treatments round the world, and to foster collaborative research. Research is at the heart of Lipoedema UK. Becoming a member gives you the opportunity to take part in research projects which will help us change the future for people living with Lipoedema.

Lipoedema UK’s research has shown that most people with the condition struggle for years to obtain a diagnosis. Many people report being misdiagnosed with obesity, but research indicates Lipoedema is a genetic condition.

So Lipoedema’s not my fault?

Many people with Lipoedema describe a feeling of relief when they receive their diagnosis, because it acknowledges that their symptoms are not the result of lifestyle choices. For advice on obtaining a diagnosis, click here. This website also contains suggestions for people seeking emotional support following diagnosis, information about the role of hormones in Lipoedema, and how you can support our work and raise awareness by becoming a member of Lipoedema UK.

Lipoedema in the family

The cause of Lipeodema is unknown. However, current research points to a combination of genes that pass down in an autosomal dominant way. This means only one parent needs to have the genes in order to pass them on. If only the mother or father has Lipoedema in their family, any child they have together will have a 50% chance of inheriting it. If Lipoedema is in both families, the chance of having a child with Lipoedema is increased slightly.

If a male child inherits the genes, he will probably be unaffected by the disease and will not need any special treatment, because Lipoedema almost exclusively affects women. However, as a carrier, a man may pass Lipoedema on to his own children without knowing it. Currently, there is no genetic diagnostic test to determine whether or not the male offspring of a Lipoedema patient is a carrier. If a female child inherits the genes, it is highly likely she could develop Lipoedema later in life. She will not need any urgent treatment or special care in her early years. If any obvious changes are observed, early referral and diagnosis are crucial so that treatment can be started promptly.

Current research

A team of Lipoedema specialists at St George’s Hospital in London is conducting a long-term study into the genetics of Lipoedema. The research team is studying families in which there are several generations with the disease. The team has made great strides in identifying genes in similar conditions, and is optimistic that the genetic predisposition(s) leading to Lipoedema can be ascertained in time. To read this research, click here.

For more information about how you can get involved by collaborating on different research projects, click here.

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