I have been told by my doctor that I have lymphoedema. What is it?
Lymphoedema is a swelling which occurs due to a failure of the lymphatic system. Swelling occurs most often in the limbs, but can occur in other parts of the body.
How did I get lymphoedema?
There are various causes of lymphoedema. Particularly for people who have cancer and for those undergoing treatment, sometimes the cause is clear but sometimes it is difficult to establish. It is most commonly associated with certain surgical procedures or radiotherapy treatment which can cause damage to the lymphatic system. If you have a low protein count in your blood, this can also lead to a form of lymphoedema. Some people have what is known as primary lymphoedema, which is due to a congenital abnormality of the lymphatic system. For others who have had damage to their lymphatics, for whatever reason, the swelling that may occur in the affected area is known as secondary lymphoedema.
Can lymphoedema be treated?
Lymhoedema can be treated in a lot of cases. However, if you suffer from certain medical conditions, this can sometimes mean that treatment will not be possible, or may have to be adapted to suit your needs. It is important to note that early detection and diagnosis of lymphoedema by your doctor is essential.
How is it treated?
If you have been diagnosed with lymphoedema you should be referred to a fully trained and certified lymphoedema therapist for full assessment and treatment.
The treatment of choice is known as Complex Decongestive Therapy. This part of your treatment, known as the intensive phase, aims to reduce the swelling. The main elements of treatment are Manual Lymphatic Drainage (often shortened to MLD – a gentle manual treatment), compression bandaging, exercise and meticulous skin care (your therapist will show you what to do to prevent skin problems which could aggravate the condition).
All these elements should be included if possible, though some may be adapted to suit your needs. However, not all the treatments can be tolerated by some patients, and some may not be suitable for clinical reasons. Your therapist should tailor your treatment to your specific needs, and explain what is being used (or not used) and why.
Once swelling has been reduced, the area affected is maintained in compression garments (eg compression stockings, compression sleeves). This is known as the maintenance phase. As this is a chronic condition, you should be reviewed regularly as part of your ongoing management in case problems arise.
Your therapist will also be able to provide you and your carers with advice on the best way to manage your lymphoedema at home.
What precautions or preventative measures should I take?
Keep the area clean and well moisturised.
If you are at risk of lymphoedema, or have already developed it, any injury to the affected limb or area will increase your risk of infection and further swelling. Take precautions to avoid cuts and scratches, burns (including sun burn), razor cuts and insect bites in the affected area at all costs. For instance, use gloves for gardening, avoid scratches from pets, use sun block and insect repellent, use depilatory creams instead of razors.
If you do get an injury in the affected area, keep a close watch on the site of the injury. But keep an eye on the affected area in general - you are at greater risk of developing cellulitis if you have lymphoedema. If you have any signs of infection (if your skin is hot or red), please contact your doctor immediately to be prescribed an appropriate antibiotic if necessary.
Where can I find further information?
The Lymphoedema Support Network can provide further information about lymphoedema, details of support groups and links to other useful sites.
