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π CustomizeMedical Overview of Congenital Primary Lymphedema Of Gordon
Sources citedA rare primary lymphedema characterized by bilateral, painless lower limb swelling present at birth. Prominent veins around the ankles and on the dorsa of the feet, dysplastic and upslanting toenails due to edema of the nailbed, and subtle dysmorphic facial features (such as high forehead, hypertelorism, depressed nasal bridge, mild bilateral ear dysplasia, and short neck) have also been described. The degree of lymphatic impairment is milder than in the otherwise clinically similar Milroy disease, as evidenced by slightly less severe lymphedema and significantly more uptake of tracers on lymphoscintigraphy.
Classification & codes: GARD 0022307 · Orphanet ORPHA:569821 · OMIM 615907 · ICD-10 Q82.0
Sources: GARD (NIH/NCATS), Orphanet Β· last reviewed 2026. Educational only β not medical advice.
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Sources: GARD (NIH/NCATS), Orphanet Β· last reviewed 2026. Educational only β not medical advice.