Case Report: New genetic variant and widely different phenotypes observed in twins with Vanishing White Matter disease

IntroductionVanishing White Matter disease (VWM) is a rare neurological disease, with an autosomal recessive inheritance. In this case report, we describe two four-year-old dizygotic twin brothers diagnosed with VWM with the same genotype and different phenotypes. We also describe a new likely patho...

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Main Authors: Ellis Oron-Lexner, Bjørk Ditlev Larsen, Maria Therese Schelde-Olesen
Format: Article
Language:English
Published: Frontiers Media S.A. 2025-08-01
Series:Frontiers in Pediatrics
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Online Access:https://www.frontiersin.org/articles/10.3389/fped.2025.1643040/full
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author Ellis Oron-Lexner
Bjørk Ditlev Larsen
Maria Therese Schelde-Olesen
author_facet Ellis Oron-Lexner
Bjørk Ditlev Larsen
Maria Therese Schelde-Olesen
author_sort Ellis Oron-Lexner
collection DOAJ
description IntroductionVanishing White Matter disease (VWM) is a rare neurological disease, with an autosomal recessive inheritance. In this case report, we describe two four-year-old dizygotic twin brothers diagnosed with VWM with the same genotype and different phenotypes. We also describe a new likely pathogenic variant leading to VWM.MethodClinical examination, radiologic analysis and genetic workups, including whole genome sequencing and trio-genome analysis were conducted to diagnose and describe the patients' disease.ResultsA four-year-old boy was hospitalized with acute loss of motor functions and a somnolent state after a minor head trauma. Based on the clinical evaluation, radiological findings and genetic analysis he was diagnosed with VWM. The proband's twin carried identical pathogenic variants and exhibited white matter lesions on MRI. However, unlike the proband who presented with non-specific symptoms since the age of one, his twin remained asymptomatic at diagnosis.DiscussionThis case may indicate that factors other than genotype could affect the age of onset of VWM. During the genetic analysis a previously unknown genetic variant was detected, which is now classified as a likely pathogenic variant of VWM.
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spelling doaj-art-9de798dec21a4e0f89596e0f8a0263412025-08-20T03:59:40ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602025-08-011310.3389/fped.2025.16430401643040Case Report: New genetic variant and widely different phenotypes observed in twins with Vanishing White Matter diseaseEllis Oron-Lexner0Bjørk Ditlev Larsen1Maria Therese Schelde-Olesen2Department of Pediatrics and Adolescent Medicine, Sygehus Sønderjylland, Aabenraa, DenmarkDepartment of Clinical Genetics, Odense Universitetshospital, Odense, DenmarkDepartment of Clinical Genetics, Odense Universitetshospital, Odense, DenmarkIntroductionVanishing White Matter disease (VWM) is a rare neurological disease, with an autosomal recessive inheritance. In this case report, we describe two four-year-old dizygotic twin brothers diagnosed with VWM with the same genotype and different phenotypes. We also describe a new likely pathogenic variant leading to VWM.MethodClinical examination, radiologic analysis and genetic workups, including whole genome sequencing and trio-genome analysis were conducted to diagnose and describe the patients' disease.ResultsA four-year-old boy was hospitalized with acute loss of motor functions and a somnolent state after a minor head trauma. Based on the clinical evaluation, radiological findings and genetic analysis he was diagnosed with VWM. The proband's twin carried identical pathogenic variants and exhibited white matter lesions on MRI. However, unlike the proband who presented with non-specific symptoms since the age of one, his twin remained asymptomatic at diagnosis.DiscussionThis case may indicate that factors other than genotype could affect the age of onset of VWM. During the genetic analysis a previously unknown genetic variant was detected, which is now classified as a likely pathogenic variant of VWM.https://www.frontiersin.org/articles/10.3389/fped.2025.1643040/fullVanishing White Matter diseaseCACH VWM syndromeeukaryotic initiation factor-2Bleukoencephalopathycase reportphenotype
spellingShingle Ellis Oron-Lexner
Bjørk Ditlev Larsen
Maria Therese Schelde-Olesen
Case Report: New genetic variant and widely different phenotypes observed in twins with Vanishing White Matter disease
Frontiers in Pediatrics
Vanishing White Matter disease
CACH VWM syndrome
eukaryotic initiation factor-2B
leukoencephalopathy
case report
phenotype
title Case Report: New genetic variant and widely different phenotypes observed in twins with Vanishing White Matter disease
title_full Case Report: New genetic variant and widely different phenotypes observed in twins with Vanishing White Matter disease
title_fullStr Case Report: New genetic variant and widely different phenotypes observed in twins with Vanishing White Matter disease
title_full_unstemmed Case Report: New genetic variant and widely different phenotypes observed in twins with Vanishing White Matter disease
title_short Case Report: New genetic variant and widely different phenotypes observed in twins with Vanishing White Matter disease
title_sort case report new genetic variant and widely different phenotypes observed in twins with vanishing white matter disease
topic Vanishing White Matter disease
CACH VWM syndrome
eukaryotic initiation factor-2B
leukoencephalopathy
case report
phenotype
url https://www.frontiersin.org/articles/10.3389/fped.2025.1643040/full
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AT mariatheresescheldeolesen casereportnewgeneticvariantandwidelydifferentphenotypesobservedintwinswithvanishingwhitematterdisease