What is Lymphedema?

People often associate breast cancer with a secondary diagnosis: lymphedema. Not everyone who has lived with breast cancer will develop lymphedema, and nowhere near everyone with lymphedema has (or has had) breast cancer. In fact, although breast cancer treatment (radiation) is the leading cause of lymphedema in the United States, worldwide it is much more common for people to develop lymphedema due to a parasitic infection. So let’s cover the basics first.

Medical ID plaque
What is Lymphedema?

Lymphedema is a lymphatic system condition with two main types: Primary and Secondary. Primary lymphedema, in which the lymphatic system causes swelling on one or both sides of the body in varying degrees (which, in turn, sometimes causes other complications), is further broken down into these three categories:

1. Congenital Lymphedema: This form of primary lymphedema is diagnosable at birth with apparent symptoms. More common in girls than boys, congenital lymphedema accounts for 10-25% of all cases of primary lymphedema and may be referred to as Milroy Disease.

2. Lymphedema Praecox: This second form of primary lymphedema is also congenital but is not diagnosed at birth. Symptoms generally appear before age 35, with puberty being the most common onset time.

3. Lymphedema Tarda: Called meige disease or lymphedema tarda, this last form of primary lyphedema is the least common, with symptoms failing to appear until after age 35. It accounts for fewer than 10% of all cases of primary lymphedema.

Secondary lymphedema is lymphedema that is non-congenital, meaning people are not born with lymphatic abnormalities but, rather, incur or develop damage to the lymphatic system during their lives. This is the form of lymphedema associated with breast cancer. In the US, the most common cause of secondary lymphedema is damage to the lymph nodes during the course of breast cancer surgery and radiation treatment. With this form of lymphedema, swelling is typically confined to one arm. Secondary lymphedema caused by lymph node damage can also result from compression or intrusion by tumors, trauma, and burns. While physical therapy and compression treatments can help, lymphedema is currently incurable. It is often accompanied by secondary and related issues such as skin infections, soreness, mobility problems, and immune system deficits, all of which can range in severity from mild to severe.

Outside the US — particularly in Africa, the Western Pacific, South and Central America, and Asia — secondary lymphedema is more commonly caused by filariasis, which is an often-disabling parasitic infestation of the lymph nodes that causes swelling to several bodily areas.

People who develop lymphedema due to breast cancer often engrave their medical alert jewelry with these specific instructions:

ICE 555-555-5555

Do you wear a Lauren’s Hope medical ID bracelet to alert EMTs to your lymphedema? We want to hear from you!

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