What Exactly IS Lymphedema?

Lymphedema is a serious disease. Whether it is mild or more severe, it can and does have a profound impact on the lives of persons living with it. Lymphedema is a unique kind of swelling due to an impairment in the lymphatic system within a defined section of the body. It is a progressive accumulation of protein-rich fluid, usually just under the skin surface, that is marked by increased size but also accompanied by progressive changes in the skin that make the skin texture rougher and more firm. Lymphedema most often is seen in the arms or legs, but can occur in any part of the body. It is generally not considered painful but is commonly marked by sensations of discomfort, fullness, aching, heaviness and/or stiffness. Even very low levels of lymphedema and impaired lymph drainage create an increased risk of serious infection. Lymphedema is usually a slowly progressing disease, but as it progresses it can lead to changes in self-image, difficulty wearing regular clothing, and challenges in completing daily activities.


Common Symptoms of Lymphedema Include:

  • Swelling in affected limb(s)

  • Discomfort (achiness, heaviness, stiffness, fullness) in affected limb(s)

  • Rough, firm skin

  • Pitting of the skin

  • Recurring skin and nail infections

***If you have any of these symptoms, talk to your health care provider. Prompt treatment can help manage the condition before complications occur***

Lymphedema can be classified as either Primary or Secondary.


Primary Lymphedema occurs when the impairment in lymph drainage is due to a developmental abnormality, such as a lack of the normal number or size of lymph vessels or nodes, or may be caused by lymph vessels that don’t function normally. Primary lymphedema may be evident around the time of birth (called Nonne-Milroy’s disease) or become evident later in life such as during puberty (Meige’s disease or sometimes less precisely referred to as Lymphedema Praecox). When it comes on after the age of 35 it is termed Lymphedema Tardum.  While Milroy’s and Meige’s are the most common forms of primary lymphedema, there are others. Research on lymphedema continues to increase our understanding of the underlying causes of primary lymphedema.


Secondary Lymphedema occurs when the impairment in lymph drainage is due to an outside (i.e., secondary) injury to otherwise normal lymph vessels or nodes. Usually the damage has to be substantial to lead to a risk of lymphedema. Some causes of secondary lymphedema include: surgery for cancer that removes lymph nodes, radiation therapy for cancer that affects lymphatic tissue, severe trauma, repeated serious infections, and advanced venous insufficiency.


The most common cause of lymphedema in the world is Filariasis. This is a form of secondary lymphedema. In some countries, typically in tropical regions of the world in which sanitation and preventative health care are limited, an infection by a parasite may settle in the lymphatic system and lead to severe lymphatic impairment. Cases of filariasis, left untreated for years, lead to the most extreme examples of lymphedema. This is rarely seen in the U.S. or other parts of the developed world. Where good treatment is available, we should never see this extreme stage of lymphedema. Even so, with patience and comprehensive intervention, even these cases can be effectively treated.


Have lymphedema and need treatment?