Lymphoedema is a condition which may affect anyone, at any time. However, it occurs with greater frequency in females. It is often distressing, can be debilitating, and is often also painful, showing itself as swelling of the limbs and body. The most common form of lymphoedema is in a limb, but it can affect any part of the body or internal organs.
It can occur at any time, once the lymphatics are damaged. Sometimes, it can start immediately and lasts for life; the swelling may occur for a while then disappear, and may or may not re-occur; or it may appear years after the event in which the lymphatics are damaged, and can be triggered by a seemingly trivial event, such as sunburn, carrying heavy weights or a long flight.
Primary Lymphoedema is usually determined from birth and is often due to the under-development of the lymphatic system - usually too few lymphatics, but there may also be cases where the lymph vessels be adequate in number, but are very dilated and do not pump properly. It can develop at any stage of life, but is most likely to occur at adolescence.
Secondary Lymphoedema can occurs where the lymphatic system becomes impaired following surgery after the removal or damage to the lymph nodes and/or radiotherapy (as in cancer treatment) or as a result of infection, severe injury, burns or trauma. It may worsen quite rapidly
Unfortunately, there is a general lack of medical knowledge and expertise in giving an early diagnosis and correct referral for treatment. Lymphoedema may often have an immense impact on a person's quality of life. Someone with Lymphoedema will usually feel any of the following symptoms:
Feeling of tightness and heaviness in the limb, which can result in the difficulty of movement?
A gradual thickening of the skin on the affected limb. Lymph may also leak through the skin as the condition worsens.
Deep aching pains or shooting pains up the limb; aching buttocks (leg lymphoedema) or back of the shoulder (arm lymphoedema)
Pins and needles in the limb.
A feeling of tightness or tenderness in the elbow or back of the knee;
Pains in the joints (e.g. elbow, knee and ankle), similar to arthritis, and may be diagnosed as this.
Tenderness in the groin of the affected leg.
"Blown-up" abdomen if a leg is affected or in "lymphoedema-all-over".
The limb or affected areas are warmer than other parts - if it becomes red, this suggests an infection which must be treated immediately.
Intolerance to heat, especially in the affected limb (climatic, saunas, baths).
Clothes or shoes do not fit properly.
Fatigue often sets in.
A person with the condition may have to adapt to an altered or more limited daily lifestyle, sometimes with a reduced working capability. Daily self-management of lymphoedema also requires certain self-discipline.
Very often, the onset of swelling and the growing realisation that there is no cure can be hugely destabilising. Many sufferers often feel isolated, partly due to the lack of medical recognition of their condition, and partly due to having few links with others also suffering from Lymphoedema. It is often here that membership of a support group can relieve some of these feelings of isolation.
To provide support for people with
To provide information about lymphoedema and its treatment
To work towards the availability of better national resources for lymphoedema treatment
To maintain contact with healthcare professionals working in lymphoedema management
To promote a network of support groups throughout the UK for people with lymphoedema
The LSN provides information and support to people with lymphoedema due to any cause and those 'at risk' of developing the condition. An information and support telephone line is available between 9.30 - 4.30, Monday - Friday.
For many patients, this is the first opportunity they have had to speak to someone who understands the condition.
You can access the LSN Support Group information at this link
They also have a Facebook page which you can access at the following link