Menkes disease complicated by concurrent Koolen-de Vries syndrome (17q21.31 deletion)

Mol Genet Genomic Med. 2019 Aug;7(8):e829. doi: 10.1002/mgg3.829. Epub 2019 Jun 28.

Abstract

Background: Koolen-de Vries (KdV) syndrome is caused by a 17q21.31 deletion leading to clinical symptoms of hypotonia and developmental delay and can present with abnormal hair texture. Menkes disease is an X-linked recessive inherited disease caused by pathogenic variants in ATP7A, which leads to profound copper deficiency.

Method: We identified an infant male who presented with prematurity, hypotonia, and dysmorphic features for whom a family history of clinical Menkes disease was revealed after discussion with the clinical genetics team.

Results: Although initial first-tier genetic testing identified Kdv syndrome (17q21.31 syndrome), the family history led the team to consider a second diagnostic possibility, and testing of ATP7A revealed a pathogenic variant (c.601C>T, p.R201X).

Conclusion: Menkes disease and KdV syndrome may both present with hypotonia and abnormal hair, in addition to seizures and failure to thrive. While these genetic conditions have overlapping clinical features, they have different natural histories and different therapeutic options. Here, we report on a patient affected with both disorders and review the diagnostic and therapeutic difficulties this presented.

Keywords: Koolen-de Vries; Menkes disease; overlapping phenotype.

Publication types

  • Case Reports

MeSH terms

  • Abnormalities, Multiple / diagnosis
  • Abnormalities, Multiple / genetics*
  • Chromosome Deletion
  • Chromosomes, Human, Pair 17 / genetics
  • Comparative Genomic Hybridization
  • Copper-Transporting ATPases / genetics*
  • DNA Mutational Analysis
  • Fatal Outcome
  • Genetic Testing
  • Histidine / analogs & derivatives
  • Histidine / therapeutic use
  • Humans
  • Hypertension, Pulmonary / complications
  • Hypertension, Pulmonary / genetics
  • Hypertension, Pulmonary / therapy
  • Infant, Newborn
  • Intellectual Disability / complications
  • Intellectual Disability / diagnosis
  • Intellectual Disability / genetics*
  • Male
  • Medical History Taking
  • Menkes Kinky Hair Syndrome / complications
  • Menkes Kinky Hair Syndrome / diagnosis
  • Menkes Kinky Hair Syndrome / drug therapy
  • Menkes Kinky Hair Syndrome / genetics*
  • Mutation
  • Nitric Oxide / therapeutic use
  • Organometallic Compounds / therapeutic use
  • Pedigree
  • Respiratory Insufficiency / genetics

Substances

  • Organometallic Compounds
  • Nitric Oxide
  • Histidine
  • copper histidine
  • ATP7A protein, human
  • Copper-Transporting ATPases

Supplementary concepts

  • Chromosome 17q21.31 Deletion Syndrome