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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.

It is intolerable that in 2024, doctors are still unable to correctly diagnose lymphoedema. Be ready to hear that you are overweight. We are aware of the significance of maintaining a healthy weight, yet it seems absurd to dismiss a patient's concerns about a swollen limb with a blanket response.

Lymphoedema signs and symptoms can include painful, heaviness, and trouble moving afflicted body parts. Members of the L-W-O Community support group have also mentioned the following symptoms:

  • 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


If lymphoedema is not treated, it will get worse. If a swelling does not go away, please consult your doctor. 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 is not just one disease 50+ types and 5 sub-types
Poster shows possibe associated health problems

Do you need support? Come and join our Support Group


Gaynor Leech, a breast cancer survivor, who also has secondary lymphoedema, established the L-W-O Community in 2013. Our goal is to help those afflected by and living with lymphoedema and other related conditions by offering them support, guidance, and information.

We are aware of the psychological, financial, and physical effects of this disease, and our online community provides a safe forum for people to exchange stories, advice, and emotional support. We are dedicated to helping people manage their lymphoedema through self-care.

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