Chronic condition that can affect mind as well as body

As many as 240,000 people in the UK are thought to be affected by the chronic condition lymphoedema. Here, the NHS Wales Health Collaborative explains what causes it and how it’s treated

LYMPHOEDEMA is a long-term chronic condition that causes swelling in the body’s tissues. It can affect any part of the body but usually develops in the arms or legs.

Other body areas that can be affected include chest or back, abdomen (tummy area), genitals, head, neck or face, breast, armpit or pelvic area.

What are the symptoms of lymphoedema?

The main symptom of lymphoedema is swelling in your tissues.

It can be difficult to fit into clothes and jewellery can feel tight.

At first, the swelling may come and go. It may get worse during the day and go down overnight.

Without treatment, it will usually become more severe and persistent.

If the swelling lasts longer than three months, it is usually lymphoedema.

Other symptoms in an affected body part can include an aching, heavy feeling; difficulty with movement; repeated skin infections; hard, tight skin; folds developing in the skin; wart-like growths developing on the skin; fluid leaking through the skin.

What causes it?

It develops when the lymphatic system doesn’t work properly.

The lymphatic system is a network of channels and glands throughout the body helping to fight infection and draining excess fluid from tissues.

It’s important that lymphoedema is identified as soon as possible. If it isn’t treated, it gets worse.

There are two main types of lymphoedema. Primary lymphoedema is caused by faulty genes that affect the development of the lymphatic system. It can develop at any age, but usually starts during infancy, adolescence, or early adulthood.

Secondary lymphoedema is caused by damage to the lymphatic system or problems with the movement and drainage of fluid in the lymphatic system.

It can be the result of an infection, injury, cancer treatment, inflammation of the limb, or a lack of limb movement. Who is affected by lymphoedema?

Lymphoedema is thought to affect more than 11,500 patients in Wales.

Primary lymphoedema is rare and is thought to affect around one in every 6,000 people. Secondary lymphoedema is much more common.

How do you treat lymphoedema?

Lymphoedema affects people physically, psychologically and socially.

It also has a significant impact on quality of life and the ability to undertake normal activities of daily living.

There’s no cure for lymphoedema but it’s usually possible to control the main symptoms using techniques to minimise fluid build-up and stimulate the flow of fluid through the lymphatic system.

These include wearing compression garments, taking good care of your skin, moving and exercising regularly, having a healthy diet and lifestyle and using specialised massage techniques.

Are there complications?

Cellulitis is the most common complication of lymphoedema. It can also have a significant psychological impact.

Cellulitis is a bacterial infection of the deep layer of skin (dermis) and symptoms can include redness and a feeling of heat in the skin; pain and increased swelling in the affected area; a high temperature (fever) and chills.

Antibiotics taken by mouth (orally) can usually be used to treat cellulitis, although severe cases may need to be treated in hospital with antibiotics given directly into a vein (intravenously).

What is the psychological impact of the condition?

Living with a long-term condition that affects your appearance can cause a great deal of distress and lead to periods of depression.

You may be depressed if you’ve been feeling down for the past few months and no longer find pleasure in things you usually enjoy.

If this is the case, talk to your GP or a member of your lymphoedema treatment team. Effective treatments are available for depression.

Talking to other people with lymphoedema can be reassuring and decrease feelings of isolation, stress and anxiety.

Remember, if you persevere with your treatment plan, your symptoms should eventually become less noticeable.

How can you treat lymphoedema?

The type of lymphoedema treatment you have will depend on how much swelling you have and which part of your body it affects.

Mild lymphoedema means there is slight swelling in the area. Your nurse or doctor will advise you about looking after your skin and show you any exercises you need to do.

Depending on where you have lymphoedema, they might also suggest a compression garment.

More severe lymphoedema might need treatment from a specialist. This is known as intensive treatment.

It could include having a daily specialist massage and then multi-layered bandaging to reduce the swelling.

This intensive treatment usually lasts for a few weeks. Once the swelling has gone down, you wear a compression garment specially measured to fit you.

You might also be taught how to bandage yourself.

Are there surgical treatments?

There are some new surgical treatments available called Lymph Node Transfer and Lymphatic Venous Anastamosis.

These super-micro surgical operations are relatively new and are proving to be beneficial for some patients.

Why you need to care for your skin?

When you have lymphoedema you need to look after your skin because any injury or infection can make the swelling worse.

This is because injury or infection can cause more damage to the lymphatic system in the area.

People with skin conditions such as eczema or psoriasis might need to see a doctor who specialises in skin conditions (a dermatologist).

Any skin breaks can make you more likely to get an infection. Keeping your skin healthy, unbroken and well-moisturised helps to prevent this.

For more information about the condition and its treatment, contact Lymphoedema Network Wales on 01639 862767.