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Langer-Giedion syndrome

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A child presents with sparse hair, a bulbous nose, multiple cartilaginous exostoses, and cone-shaped epiphyses on hand radiographs. CMA reveals a deletion at 8q24.1.

AD (de novo); 8q24.1 contiguous gene deletion involving TRPS1 and EXT1

  • Also known as trichorhinophalangeal syndrome type II (TRPS II)
  • TRPS1 deletion → hair, facial, and skeletal features (trichorhinophalangeal phenotype)
  • EXT1 deletion → multiple cartilaginous exostoses (hereditary multiple osteochondromas)
  • Contiguous gene syndrome: combined phenotype of TRPS I + hereditary multiple exostoses
  • Sparse, fine, slowly growing scalp hair
  • Bulbous "pear-shaped" nose
  • Long philtrum, thin upper lip
  • Cone-shaped epiphyses (characteristic radiographic finding)
  • Multiple cartilaginous exostoses (osteochondromas)
  • Short stature
  • Mild to moderate intellectual disability
  • Redundant skin in infancy
  • CMA detects 8q24.1 deletion encompassing TRPS1 and EXT1
  • Hand radiographs: cone-shaped epiphyses
  • Skeletal survey: multiple exostoses
  • Orthopedic surveillance for exostoses; surgical removal if painful or interfering with function
  • Small increased risk for malignant transformation of exostoses to chondrosarcoma or osteosarcoma
  • Growth monitoring
  • Developmental support
  • Dermatologic management for skin laxity

"Can you Get it Done (Giedion) in 8 hours instead of 24 hours?" → locus is 8q24.

"I was TRaPped in residency for the Longest (Langer) time with no EXIT in sight."TRPS1 and EXT1 deletion, Langer-Giedion syndrome.

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