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About Lymphoedema

Lymphoedema is an abnormal collection of lymphatic fluid that causes swelling, mostly in the arms and legs and occasionally in other parts of the body.

You'll often hear specialists refer to primary or secondary lymphoedema.

Primary lymphoedema

This type of lymphoedema makes up 5–10% of all lymphoedema cases. It arises spontaneously because of an under-developed lymphatic system where lymphatic vessels are missing or impaired. Primary lymphoedema affects about 1 in 6000 people, making it a rare condition. It may be diagnosed at birth, puberty or even mid-late adulthood.

Secondary lymphoedema

This type of lymphoedema arises when lymph nodes have been damaged or removed, and commonly occurs following breast cancer treatment and other surgeries that impact on the lymph nodes.

What happens if it is left untreated?

If left untreated, lymphoedema can result in disfiguring and disabling swelling of the limb and sometimes the adjacent trunk. Elephantiasis is an extreme form of lymphoedema. Early diagnosis and treatment assures the best outcome.

The treatment of primary and secondary lymphoedema is the same but primary lymphoedema is often more extensive and of longer duration before diagnosis. Managing lymphoedema in children is especially challenging.

To understand more about lymphoedema, see our additional pages on  Complications and Treatments.

More information

The Lymphedema People website is a wonderful support site from the USA, with a lot of advice on different matters. They also have a page with more extensive information about the various types of inherited lymphoedemas.