10 Things I Want My Physician To Know About Lymphedema

Lymphedema is a chronic disease without a cure. But you may not be fully aware of the devastating physical and emotional toll this painful, debilitating disease can take on people. The handout below spells this out from the patient perspective. Created by a group of patients who sometimes feel they are part of an “invisible population” suffering from a condition that robs them of the joy of living.

Here are the 10 things I want my physician to know about lymphedema.

• Lymphedema must be diagnosed early.
• Lymphedema may initially present as chronic swelling.
• Lymphedema as a potential outcome requires patient education, especially before surgery that will affect lymph nodes.
• Lymphedema has both physical and phycological effects.
• Lymphedema often causes individuals to feel unsupported and isolated.
• Lymphedema patients often need psychological support.
• Lymphedema is exhausting and disabling.
• Lymphedema decreases quality of life.
• Lymphedema management is complex and expensive.
• Lymphedema is different in every individual.

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