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A teenage boy with nail dystrophy, oral leukoplakia, and lacy skin pigmentation develops aplastic anemia. Telomere length is very short.

XLR (DKC1), AD (TERC, TERT), AR (multiple genes)

  • Telomere biology disorders
  • Classic triad: Nail dystrophy, oral leukoplakia, abnormal skin pigmentation
  • Bone marrow failure (aplastic anemia)
  • Pulmonary fibrosis
  • Liver disease
  • Cancer predisposition
  • Very short telomeres
  • Flow-FISH telomere length in peripheral blood leukocytes: very short telomeres (below the first percentile for age) is the key diagnostic finding
  • Confirmatory molecular testing: panel or exome covering DKC1, TERC, TERT, and other telomere-maintenance genes
  • Bone marrow biopsy to assess for hypocellularity / aplastic anemia and to exclude myelodysplastic syndrome
  • HSCT (avoid radiation-based conditioning), surveillance

DYSKE = DYStal Kromosome Ends RApidly become Tiny: Dyskeratosis congenita affects the distal chromosome ends (telomeres).

Dys-keratosis = abnormal keratin (a protein found in nails and hair)

DKC: D looks like a nail (or the end of a finger), Kough (pulmonary fibrosis), Cytopenia (bone marrow failure) with Chest or Neck lacy pigmentation (CoNgenita).

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