Lymphoedema

What is lymphoedema?

Lymphoedema is a long-term (chronic) condition where a protein-rich fluid called lymph collects in the tissues and causes swelling. Lymphoedema occurs either because the lymphatic system isn’t working properly due to conditions or injuries (secondary lymphoedema) or because it’s not developed properly due to genetic reasons (primary lymphoedema).

What causes lymphoedema?

Primary and secondary lymphoedema can have different causes.

Causes of primary lymphoedema:

Aplasia: Parts of the lymphatic system are missing
Hypoplasia: Lymphatic vessels are underdeveloped or present in below-average numbers. This is the most common cause of primary lymphoedema.
Hyperplasia: Lymphatic vessels are larger than normal and don't work as well as normal-sized vessels.
Fibrosis of lymph nodes: hardening and scarring of the tissue

Causes of secondary lymphoedema:

Cancer and its treatment
Obesity
Trauma
Infectious diseases (e.g. parasites)

In both cases, missing or damaged lymph vessels or lymph nodes cause a blockage of the lymphatic system. The lymph is unable to drain properly and collects in the tissues. This results in swelling in the affected areas.

Signs and symptoms of lymphoedema

The most common signs and symptoms of lymphoedema are:

Swelling of your arm(s), leg(s) or other parts of the body
Feeling of heaviness or tightness
Aching or discomfort
Less mobility and range of motion
Clothing or jewellery feel tighter than usual
Skin changes such as hard (fibrotic) skin in advanced condition

There is no specific test or tool to diagnose lymphoedema, which leaves many patients without a correct diagnosis for a long time.

How can lymphoedema be treated?

The gold standard for treating lymphoedema is called Complete Decongestive Therapy (CDT). The aim of CDT is to reduce swelling, improve the condition of the skin and increase mobility. It comprises two parts:

Phase I – Decongestion: Intensive treatment phase to reduce the swelling as much as possible, improve the limb shape and skin condition
Phase II – Maintenance: Long-term control to maintain and maximize the achievements of Phase I

Both phases have several elements in common. These are compression therapy, Manual Lymphatic Drainage (MLD), skin care, and exercise. Self-Management plays an important role as well – it means both a deep understanding of the condition and ways to manage your lymphoedema on your own and together with your carers.