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.