Lymphoedema Association

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WHAT IS LYMPHOEDEMA?

 

Lymphoedema is a swelling that develops as a result of an impaired lymphatic system. This may be as a result of the lymphatic system not developing properly, or through damage or trauma. It can affect any part of the body but is most commonly seen in an arm or a leg. Lymphoedema is a potential side effect of treatment for Head and Neck Cancers .

If you have developed lymphoedema, you are not alone; it is estimated that well over 100,000 men, women and children in the UK are living with the condition. Although lymphoedema is a long term condition, with the right information, support and treatment there is much that can be done to improve both swelling and other symptoms.

WHO ARE THE LYMPHOEDEMA SUPPORT NETWORK?

The LSN is a registered charity run by people who live with lymphoedema and is the largest information provider about the condition in the UK. This website forms part of our work and contains information for patients about the condition and the experience of living with lymphoedema as well as information for health care professionals looking to support patients with lymphoedema.

WHAT CAN BE DONE TO TREAT LYMPHOEDEMA?

 

Firstly, it is essential that lymphoedema is correctly diagnosed and appropriately assessed. Unfortunately, there is still a major lack of medical knowledge and expertise and some people are still told ‘there is nothing that can be done to help’.

However, the British Lymphology Society has a comprehensive Directory of Services, which will highlight the nearest specialist centre to you ; they have also produced a document that sets out minimum standards of care. If you are experiencing difficulties obtaining help – ensure your GP is given a copy. If you have trouble accessing the list , or finding a service call the Lymphoedema Association on 020 7351 4480 and they will be able to help.

Assessment (usually carried out by specially trained nurses and physiotherapists) will ascertain the actual cause of the swelling, as well as determining the overall size and extent of the swelling, which may alter the type of treatment you are offered.

Generally, there are four components of care that will be recommended for people with mild to moderate swelling of their limbs:

  • Skin Care to keep the skin and tissues in good condition and to prevent/reduce the risk of infection. For more information see the LSN ‘Skin Care’ fact sheet.
  • External Support/Compression in the form of elastic compression garments to help prevent the swelling from building up in the limb.
  • A programme of exercise and movement to try and maximise lymph drainage without over exertion (this would cause the swelling to worsen). For more information on exercise see the LSN ‘Recreational Exercise’ fact sheet.
  • Simple Lymphatic Drainage (SLD) – a gentle massage technique that is based on the principles of Manual Lymphatic Drainage (MLD) (see below). It involves the use of simple hand movements to try and move the swelling out of the affected area. It is designed to be carried out by patients themselves – or their relatives or carers.

Reassessment and monitoring of progress is essential to ensure good results – as is, a high level of motivation and compliance by the patient themselves.

For people with a more severe swelling, additional treatments may be recommended within a more intensive treatment programme called Decongestive Lymphatic Therapy (DLT) or Combined Decongestive Therapy (CDT). This intensive treatment may last for a period of 2 – 4 weeks and combines a package of treatments on a daily basis. These may include some of the above, plus one or more of the following:

  • Manual Lymphatic Drainage (MLD) – a specialised form of massage carried out by a trained therapist to move the skin in specific directions based on the underlying anatomy and physiology of the lymphatic system.
    For more information see the LSN ‘Manual Lymphatic Drainage Therapy’ fact sheet.
  • Multi-Layer Lymphoedema Bandaging (MLLB) – a multi-layer system of bandages provides a rigid casing for the muscles to work against which helps to improve the shape and size of severe swelling.
  • Intermittent Sequential Pneumatic Compression Therapy – despite this type of therapy being available for numerous years, there is no real proof of effectiveness. Caution should be taken when using these machines – and should only be used under the supervision of a lymphoedema practitioner.
  • Drug Therapy – although research is still ongoing, drug therapy for pure lymphoedema is very limited. However, there are certain situations when some drugs will be of benefit – your therapist will be able to advise you.
  • Surgery – traditional de-bulking operations rarely prove beneficial for lymphoedema, though there are certain situations where it may prove essential e.g. for eyelid or genital swelling. If required, surgery should only be performed by surgeons who have experience with lymphoedema and the lymphatic system.

Until relatively recently, there were limited options open to people who developed lymphoedema – many were told they would have to live with this often distressing condition. However, with the committed efforts of many Health Care Professionals (HCP’s) – effective treatments have become much more widely available. With the continued dedication and enthusiasm of such HCP’s, and the ceaseless campaigning, to raise awareness of the condition by the Lymphoedema Support Network, more and more people affected by lymphoedema will be able to access appropriate and successful treatments and the nihilistic attitude once held will become a thing of the past.

With appropriate information and the help and support of a lymphoedema practitioner, there is much that patients can do to help themselves in the management and control of their condition.

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