Primary Lymphoedema


Lymphoedema is a chronic (long-term) condition that causes swelling in the body's tissues. Primary lymphoedema is caused by a developmental abnormality of the lymphatic system due to a genetic fault.  It can affect any part of the body, but usually develops in the arms or legs.  Lymphoedema especially primary lymphoedema often takes several years to get a diagnosis whereas cancer related lymphoedema is diagnosed quickly because the patient is in the system.  Primary lymphoedema is not just one disease, scroll down to the posters.

Unfortunately, in 2021 we still have doctors who are incapable of diagnosing lymphoedema which is unacceptable.  Be prepared to be told you are fat, and we do understand how important weight control is, but to sweep away a patient’s concerns when presented with a swollen limb with a generic answer beggars’ belief. 

Symptoms of lymphoedema can include an aching, heavy feeling in affected body parts and difficulty moving them.  Other symptoms reported by L-W-O Community support group members include:

  • Fatigue

  • Feeling as if legs feet are going to burst

  • Inflammation

  • Joint Issues

  • Peripheral Neuropathy due to the pressure of the lymphoedema on nerve endings

  • Pins & Needles

  • Restless Leg Syndrome


Without treatment lymphoedema will get worse, please do not leave any swelling that does not go away, do speak to your doctor and if you are a patient with a swollen limb, please be persistent.

Primary lymphoedema - that developed at birth or shortly after puberty and is caused by faulty genes or missing genes.

Primary Lymphoedema - not just one disease

Graphics by Gaynor Leech

Possible associated health problems with primary lymphoedema

Graphics by Gaynor Leech

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