WHAT IS LYMPHEDEMA?

Lymphedema (LE) is a disease where protein-rich fluid known as lymph, collects just under the skin causing swelling  typically in the arms or legs. Damage to the body’s lymphatic system changes the way lymph fluid moves from arms and legs to the core of our body. Left untreated the swelling (edema) progresses, resulting in pain, decreased mobility, recurrent soft tissue infections and permanent disability. All of which have long term emotional, psychological and economic consequences for the patients, their families, employers, caregivers and the medical system.

Estimates from recent Canadian sources indicate that approximately 1 million Canadians have the incurable disease, many unaware of the true cause of their swelling which is often misinterpreted as fat. There are many causes of lymphedema.

Lymphedema appears in two forms;  a categorization based on the initial cause either primary or secondary. 
Primary  lymphedema  less common but can occur at any stage in life from birth through to mid 50’s, a common age of onset. Genetic malformation include absence or abnormal development of the lymphatic channels and/or lymph nodes in the arm pit or groin region. Congenital lymphedema is when symptoms present at birth or during infancy. Lymphedema praecox is primary lymphedema that presents in teenage years, Lymphedema tarda presenting in adult years often when the genetic predisposition is triggered by a trauma.  

Primary congenital lymphedema typically affects only one limb and should not be confused with lipedema that  affects both limbs.      

Secondary lymphedema, Presenting as  swollen, heavy limb(s) and an immune system that can’t do its job, results from post trauma damage to the lymphatic system. Originally thought to to be primarily related to cancer surgery & treatment, however newer evidence indicates that cancer treatment accounts for only half of all secondary lymphedema patients.Secondary Lymphedema can be triggered by accidents, injuries and other non cancer surgeries, cellulitis infection, obesity & prolonged edema from other causes such as heart failure all of which can damage lymph nodes &  lymphatic channels. As obesity rates rise in Canada the prevalence of secondary lymphedema will also increase.                    

Many patients go years without a proper diagnosis which leads to a compromised immune system & the possibility of serious cellulitis infection which cause further damage to the Lymphatic system. When LE is identified, the standard advice is to buy over-the counter support garments to wear when flying.  A treatment which is totally inadequate.

Conventional treatment for lymphedema includes; manual lymphatic massage (MLD)  the use of compression bandages and garments, plus skin care & exercise. This approach known as Complete Decongestive Therapy (CDT) is designed to minimize the accumulation of lymphatic fluid within the soft tissue of the affected limb.

It is important to start treatment of LE  in the early stages,( 0-2)  when it can have the most impact.  Edema from uncontrolled collections of lymph fluid can be painful and may set up recurrent soft tissue cellulitis infections. Profound, chronic lymphedema (stage 4) commonly referred to as 'elephantiasis', can result in open, non-healing ulcers and a woody appearance of the skin, the effects of which are irreversible.

There are a lot of things that a person, especially cancer survivors could do to ensure that the lymphedema (LE) is delayed or the severity is reduced. The goal of the BC Lymphedema Association BCLA) is to provide information & support for those newly diagnosed, uncertain about what is happening to them and where to turn for help. The majority of the medical profession know very little about Lymphedma or how to treat it.

BCLA is a resource to help patients find therapist, fitters, and suppliers & learn more about how to manage their condition.