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Lymphedema pp 573-577 | Cite as

Patient/Family Advocacy

  • Wendy Chaite
Chapter

Abstract

Lymphedema – how does one feel, what does one do when given this diagnosis? I know because our daughter was born in 1993 with a complex lymphatic disease – including lymphedema. We were told at the time that there is insufficient scientific/medical knowledge to make a precise diagnosis, there are grossly inadequate treatment options, and there is no cure. Like many, we felt ignorant, isolated, frightened, powerless, and hopeless. The months and years following were filled with the diligent pursuit of a definite diagnosis and optimal medical care. Like many patients we have traveled the country and even sought expertise abroad – frustrated by the limitation of the basic knowledge of the lymphatic system – let alone diseases thereof. Though we’ve been able to control our daughter’s leg lymphedema with complex decongestive therapy and compression, we have had less success with other swollen areas (face, arm, genitals, and trunk) and her underlying disease (diffuse lymphangiomatosis) continues to progress, causing serious, life threatening medical complications.

Keywords

Lymphatic System Personal Health Record Lymphatic Disease Swell Area Optimal Medical Care 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Copyright information

© Springer-Verlag London Limited 2011

Authors and Affiliations

  • Wendy Chaite
    • 1
  1. 1.Lymphatic Research FoundationGlen CoveUSA

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