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Jervell and Lange-Nielsen syndrome

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A child with congenital profound sensorineural hearing loss has syncopal episodes during exercise. ECG reveals a markedly prolonged QTc interval of 550 ms.

AR; KCNQ1 or KCNE1 (potassium channel genes)

  • Same genes as Long QT type 1 (AD) - but homozygous/compound het
  • Profound congenital sensorineural hearing loss
  • Long QT syndrome (more severe than typical LQTS)
  • Risk of syncope, cardiac arrhythmias, sudden death
  • Triggered by exercise, emotion, swimming
  • ECG showing markedly prolonged QTc
  • Audiometry confirms congenital profound sensorineural hearing loss
  • Molecular testing of KCNQ1 and KCNE1 confirms the diagnosis
  • Biallelic (homozygous/compound heterozygous) variants distinguish this autosomal recessive form from autosomal dominant Romano-Ward long QT
  • Beta-blockers, ICD consideration, avoid QT-prolonging drugs

"jEARvell and LONG-Nielsen": EAR (deafness) and LONG QT, the two key features, are right in the name

AR inheritance: Jervell and Lange-Nielsen are 2 people, so you need both parents to be carriers (autosomal recessive). This is unlike most other congenital arrhythmias, which are AD

Long eponymous name = Long QT: Syndromes with long, hyphenated names (Jervell and Lange-Nielsen, Andersen-Tawil, Romano-Ward) are associated with Long QT

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