Pular para o conteúdo
Leucoencefalopatia progressiva de início na idade adulta-surdez de início precoce
ORPHA:652532CID-10 · G37.8DOENÇA RARA
Esta doença tem causa genética. Recomendamos procurar um médico geneticista para diagnóstico, exames genéticos e aconselhamento familiar.
Início adultaHerança AR
Sinônimos clínicos: Leucoencefalopatia progressiva de início precoce com perda auditiva na idade adulta

É uma doença genética rara que afeta o sistema nervoso. Ela se manifesta com surdez desde o nascimento ou que aparece cedo na vida. Na idade adulta, surge um problema progressivo que atinge a parte branca do cérebro (leucoencefalopatia). A partir dos 20 ou 30 anos de idade, a pessoa pode apresentar piora progressiva da memória, raciocínio e outras funções mentais, além de alterações no comportamento. Às vezes, esses problemas são precedidos por um leve atraso no desenvolvimento e dificuldades de aprendizado durante a infância. Também foram relatados problemas de visão na idade adulta. Não há registro de calcificação (depósito de cálcio) no cérebro ou na medula espinhal.

Em construçãohistóricoSugerir correção
Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

💬
EM LINGUAGEM SIMPLES

Esta é uma doença genética muito rara caracterizada por perda da audição desde o nascimento ou primeiros anos e por alterações neurológicas que surgem na idade adulta. Por volta dos 20 a 30 anos, a pessoa pode apresentar dificuldades progressivas de raciocínio, memória, mudanças no comportamento e eventuais problemas de visão. A condição é causada por alterações com herança autossômica recessiva no gene KARS1. Não há medicamentos específicos que curem a condição, mas o SUS prevê atendimentos de reabilitação e exames como o sequenciamento do exoma para o diagnóstico.

Informacoes curadas por IA — podem conter imprecisoes
[1] Orphanet [2] GenCC
📋
Informacoes curadas por IA — podem conter imprecisoes

É uma doença genética rara que afeta o sistema nervoso. Ela se manifesta com surdez desde o nascimento ou que aparece cedo na vida. Na idade adulta, surge um problema progressivo que atinge a parte branca do cérebro (leucoencefalopatia). A partir dos 20 ou 30 anos de idade, a pessoa pode apresentar piora progressiva da memória, raciocínio e outras funções mentais, além de alterações no comportamento. Às vezes, esses problemas são precedidos por um leve atraso no desenvolvimento e dificuldades de aprendizado durante a infância. Também foram relatados problemas de visão na idade adulta. Não há registro de calcificação (depósito de cálcio) no cérebro ou na medula espinhal.

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
<1 / 1 000 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Casos conhecidos
8
pacientes catalogados
Início
Adult
🏥
SUS: Cobertura mínimaScore: 15%
2 procedimentos SIGTAPCID-10: G37.8
🇧🇷Dados SUS / DATASUS
EXAMES E PROCEDIMENTOS RELACIONADOS (2)
•
Sequenciamento completo do exoma (WES)
•
Atendimento em reabilitação — doenças raras
Você se identifica com essa condição?
O Raras está aqui pra te apoiar — com ou sem diagnóstico

Encontrou um erro ou informação desatualizada? Sugira uma correção →

Entender a doença

Do básico ao detalhe, leia no seu ritmo

Preparando trilha educativa...

Sinais e sintomas

O que aparece no corpo e com que frequência cada sintoma acontece

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa8
Últimos 10 anos28publicações
Pico20236 papers
Linha do tempo
20202018Hoje · 2026📈 2023Ano de pico
Publicações por ano (últimos 10 anos)

Encontrou um erro ou informação desatualizada? Sugira uma correção →

Genética e causas

O que está alterado no DNA e como passa nas famílias

Genes associados

1 gene identificado com associação a esta condição. Padrão de herança: Autosomal recessive.

KARS1Lysine--tRNA ligaseDisease-causing germline mutation(s) inTolerante
VIAS BIOLÓGICAS (3)
Selenoamino acid metabolismCytosolic tRNA aminoacylationTranscriptional and post-translational regulation of MITF-M expression and activity
MECANISMO DE DOENÇA

Charcot-Marie-Tooth disease, recessive intermediate B

A form of Charcot-Marie-Tooth disease, a disorder of the peripheral nervous system, characterized by progressive weakness and atrophy, initially of the peroneal muscles and later of the distal muscles of the arms. Recessive intermediate forms of Charcot-Marie-Tooth disease are characterized by clinical and pathologic features intermediate between demyelinating and axonal peripheral neuropathies, and motor median nerve conduction velocities ranging from 25 to 45 m/sec.

OUTRAS DOENÇAS (7)
autosomal recessive nonsyndromic hearing loss 89Charcot-Marie-Tooth disease recessive intermediate Bdeafness, congenital, and adult-onset progressive leukoencephalopathyleukoencephalopathy, progressive, infantile-onset, with or without deafness
HGNC:6215UniProt:Q15046

Variantes genéticas (ClinVar)

160 variantes patogênicas registradas no ClinVar.

🧬 KARS1: NM_005548.3(KARS1):c.1675A>G (p.Thr559Ala) ()
🧬 KARS1: NM_005548.3(KARS1):c.135G>C (p.Glu45Asp) ()
🧬 KARS1: NM_005548.3(KARS1):c.829G>T (p.Gly277Ter) ()
🧬 KARS1: NM_005548.3(KARS1):c.388+5G>C ()
🧬 KARS1: NM_005548.3(KARS1):c.1270G>A (p.Asp424Asn) ()
Ver todas no ClinVar

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Carregando informações de tratamento...

Onde tratar no SUS

Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)

🇧🇷 Atendimento SUS — Leucoencefalopatia progressiva de início na idade adulta-surdez de início precoce

🗺️

Selecione um estado ou use sua localização para ver resultados.

Dados de DATASUS/CNES, SBGM, ABNeuro e Ministério da Saúde. Sempre confirme a disponibilidade diretamente com o estabelecimento.

Pesquisa ativa

Ensaios clínicos abertos e novidades científicas recentes

Pesquisa e ensaios clínicos

Nenhum ensaio clínico registrado para esta condição.

🧪 Está conduzindo uma pesquisa?
Divulgue para pacientes e familiares que acompanham esta doença.
Divulgar pesquisa →

Publicações mais relevantes

Timeline de publicações
0 papers (10 anos)
#1

Early subtypes and progressions of progressive supranuclear palsy: a data-driven brain bank study.

Journal of neurology2025 Oct 17

Progressive supranuclear palsy (PSP) is typically characterized by vertical supranuclear gaze palsy and early falls, referred to as Richardson's syndrome (PSP-RS). Other presentations include postural instability (PSP-PI), Parkinsonism (PSP-P), speech/language disorder (PSP-SL), frontal presentation (PSP-F), ocular motor dysfunction (PSP-OM), and corticobasal syndrome (PSP-CBS). However, differences across the early presentations and their subsequent clinical courses remain to be elucidated. This study aimed to characterize early PSP subtypes and their subsequent progressions using a large postmortem dataset. An automated pipeline incorporating fine-tuned Chat Generative Pretrained Transformer (ChatGPT) was developed. The pipeline collected 195 clinical features with onset information from autopsy-confirmed PSP cases without significant neurodegenerative co-pathologies. A structured clinicopathologic dataset from 588 patients was analyzed. The results from unsupervised clustering were distilled into a decision tree model. The mutually exclusive algorithm identified seven subtypes: PSP-PF (postural and frontal dysfunction), PSP-RS, PSP-PI, PSP-P, PSP-SL, PSP-F, and PSP-OM, based on five clinical manifestations: frontal presentation, postural instability, ocular motor dysfunction, speech/language disorder, and Parkinsonism. PSP-PF showed rapid progression, the shortest median disease duration (six years), and high tau burden in cortical and subcortical regions. In PSP-F, frontal presentation preceded other symptoms by four years, with a nine-year disease duration-second longest after PSP-P (10 years). PSP-CBS was not identified as an independent subtype. This data-driven study identified a novel, aggressive PSP phenotype characterized by early postural and frontal dysfunction. Early subtyping using the decision tree model would help clinicians estimate progression and facilitate early patient recruitment for clinical trials.

#2

Early Subtypes and Progressions of Progressive Supranuclear Palsy: A Data-Driven Brain Bank Study.

medRxiv : the preprint server for health sciences2025 Sep 04

Progressive supranuclear palsy (PSP) is typically characterized by vertical supranuclear gaze palsy and early falls, referred to as Richardson's syndrome (PSP-RS). Other presentations include postural instability (PSP-PI), parkinsonism (PSP-P), speech/language disorder (PSP-SL), frontal presentation (PSP-F), ocular motor dysfunction (PSP-OM), and corticobasal syndrome (PSP-CBS). Differences across the early presentations and in their subsequent progression have yet to be elucidated. This study aimed to characterize early PSP subtypes and their subsequent progressions using a large postmortem dataset. An automated pipeline incorporating fine-tuned Chat Generative Pre-trained Transformer (ChatGPT) was developed. The pipeline collected 195 clinical features with onset information from autopsy-confirmed PSP cases without significant neurodegenerative co-pathologies. A structured clinicopathologic dataset from 588 patients was analyzed. After distilling results with unsupervised clustering, a decision tree model was developed. With five clinical manifestations: frontal presentation, postural instability, ocular motor dysfunction, speech/language disorder, and parkinsonism, this mutually exclusive algorithm identified seven subtypes: PSP-PF (postural and frontal dysfunction), PSP-RS, PSP-PI, PSP-P, PSP-SL, PSP-F, and PSP-OM. PSP-PF showed rapid progression, the shortest median disease duration (six years), and high tau burden in cortical and subcortical regions. In PSP-F, frontal presentation preceded other symptoms by four years, with a nine-year disease duration-second longest after PSP-P (10 years). PSP-CBS was not identified as an independent subtype. This data-driven study identified a novel, aggressive PSP phenotype characterized by early postural and frontal dysfunction. Early subtyping utilizing the decision tree model would help clinicians estimate progression and facilitate early patient recruitment for clinical trials.

#3

A case of a young patient with progressive vision loss: An atypical presentation of the rare Wolfram Syndrome in a Middle Eastern individual.

American journal of ophthalmology case reports2025 Sep

To describe an atypical presentation of a rare disease in a young middle eastern woman with a relatively adult-onset type 1 diabetes mellitus, bilateral optic atrophy and progressive decreased vision diagnosed as the Wolfram disease. A 38-year-old female patient presented with progressive bilateral loss of vision and dyschromatopsia during a 4-year follow-up. On examination at the neuro-ophthalmology clinic the visual acuity was 20/100 in the right eye and 20/80 in the left eye. Color vision evaluated with Ishihara color plates was 0/12 in each eye, optic discs were pale, while visual field testing revealed bilaterally constriction. Optical coherence tomography (OCT) scans showed gross thinning of optic nerve and macular layers. The medical history revealed diabetes mellitus type 1 at the age of 33 years-old. On follow-up visits further progressive vision loss was observed with additional complaints of mild hearing loss. The patient was referred for genetic testing. Wolfram syndrome (WFS) is an autosomal recessive rare neurodegenerative disorder characterized by early onset diabetes mellitus and progressive optic atrophy in the first decade of life, hence known as 'DIDMOAD' syndrome, standing for diabetes insipidus (DI), diabetes mellitus (DM), optic atrophy (OA) and deafness (D)(1). Early onset DM and OA are usually the first manifestations of the syndrome, presenting classically in childhood. In contrast, the present patient presented later with type 1 diabetes mellitus and optic atrophy demonstrating a variability inherent to this syndrome. This is a case of Wolfram Syndrome in an individual of Middle Eastern ancestry. A high index of suspicion is crucial when evaluating patients who present with both diabetes mellitus and optic atrophy, as this combination may indicate atypical manifestations of rare genetic disorders such as Wolfram Syndrome DM and OA. Genetic testing of family members and offspring of patients is required to confirm the diagnosis. There is no definite treatment to date for this disease (2).

#4

On the Difficulty of Defining Duration of Deafness for Adults With Cochlear Implants.

Ear and hearing2025

The amount of time that a person with a cochlear implant experiences severe-to-profound hearing loss before implantation is thought to impact the underlying neural survival, health, and function of the auditory system, thus likely being closely related to post-implantation performance in auditory tasks. The reporting of this number in the research literature is ubiquitous. Although it is most commonly called "duration of deafness," our point of view is that the term is imprecise and the calculation of this number can be nontrivial, particularly for cases of adult onset of hearing loss. We provide suggestions on changing the terminology to "duration of severe-to-profound hearing loss." We also propose a method of determining this number through a series of questions that leads a participant/patient through their progression of hearing loss. We encourage research methodology that requires researchers to explicitly report the process used to determine the duration of severe-to-profound hearing loss with the overall goals of (1) improving rigor and reproducibility in cochlear-implant research and (2) improving the translation between research findings and clinical recommendations.

#5

An X-Linked Ataxia Syndrome in a Family with Hearing Loss Associated with a Novel Variant in the BCAP31 Gene.

Movement disorders : official journal of the Movement Disorder Society2025 Apr

Pathogenic variants in B-cell receptor-associated protein (BCAP31) are associated with X-linked, deafness, dystonia and cerebral hypomyelination (DDCH) syndrome. DDCH is congenital and non-progressive, featuring severe intellectual disability (ID), variable dysmorphism, and sometimes associated with shortened survival. BCAP31 encodes one of the most abundant chaperones, with several functions including acting as a negative regulator of endoplasmic reticulum (ER) calcium ion (Ca2+) concentration. Here, we characterize an X-linked syndrome, its underlying genotype, and a functional evaluation of the identified candidate genetic variant. Evaluation of motor features, neuroimaging studies, neurophysiological, and cognitive tests. Whole exome sequencing (WES) was applied, a plasmid encoding BCAP31 with and without a candidate variant was transfected into SH-SY5Y cells to assess subcellular location and to measure Ca2+ levels in the cytoplasm. Adult-onset ataxia, cognitive impairment, and hearing loss leading to deafness are the predominant features. Reduced penetrance, slow progression with preserved ability to walk in advance age, and universal cerebellar atrophy are other features for this syndrome. This condition is associated with the new variant c.22G>A (V8I) in BCAP31 at Xq28. The subcellular location of the V8I BCAP31 protein was not altered but caused significant elevation of cytosolic Ca2+. Our findings expand the spectrum of variants in BCAP31 from neurodevelopmental syndromes to include a progressive neurodegenerative disease with variable expressivity. This is the first time ataxia is described in association with a BCAP31 variant and functional evidence of pathogenicity is provided. Additional BCAP31 cases featuring ataxia are needed to establish an association. © 2025 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

Publicações recentes

Ver todas no PubMed

📚 EuropePMCmostrando 25

2025

Early subtypes and progressions of progressive supranuclear palsy: a data-driven brain bank study.

Journal of neurology
2025

A case of a young patient with progressive vision loss: An atypical presentation of the rare Wolfram Syndrome in a Middle Eastern individual.

American journal of ophthalmology case reports
2025

On the Difficulty of Defining Duration of Deafness for Adults With Cochlear Implants.

Ear and hearing
2025

An X-Linked Ataxia Syndrome in a Family with Hearing Loss Associated with a Novel Variant in the BCAP31 Gene.

Movement disorders : official journal of the Movement Disorder Society
2024

The human OPA1delTTAG mutation induces adult onset and progressive auditory neuropathy in mice.

Cellular and molecular life sciences : CMLS
2024

Rational design of a genomically humanized mouse model for dominantly inherited hearing loss, DFNA9.

Hearing research
2023

Accurate phenotypic classification and exome sequencing allow identification of novel genes and variants associated with adult-onset hearing loss.

PLoS genetics
2023

TMTC4 is a hair cell-specific human deafness gene.

JCI insight
2023

SERAC1 Deficiency- A New Phenotype.

Endocrine, metabolic &amp; immune disorders drug targets
2023

Recent advances and future challenges in gene therapy for hearing loss.

Royal Society open science
2023

Novel SERAC1 Variant Presenting With Adult-Onset Extrapyramidal Dystonia-Parkinsonism Phenotype: A Case Report.

Neurology. Genetics
2022

An Epidemiological Study of Hearing Loss in a Peripheral Tertiary Care Hospital.

Indian journal of otolaryngology and head and neck surgery : official publication of the Association of Otolaryngologists of India
2022

Clinical Heterogeneity Associated with MYO7A Variants Relies on Affected Domains.

Biomedicines
2022

Cortical Auditory Evoked Potential in Adults With Cochlear Implants: A Comparison With Adults With Normal Hearing.

Journal of audiology &amp; otology
2021

Three cases of adult-onset Brown-Vialetto-Van Laere syndrome: Novel variants in SLC52A3 gene and MRI abnormalities.

Neuromuscular disorders : NMD
2021

Genotype-phenotype Correlation Study in a Large Series of Patients Carrying the p.Pro51Ser (p.P51S) Variant in COCH (DFNA9): Part I-A Cross-sectional Study of Hearing Function in 111 Carriers.

Ear and hearing
2021

Auditory and olfactory findings in patients with USH2A-related retinal degeneration-Findings at baseline from the rate of progression in USH2A-related retinal degeneration natural history study (RUSH2A).

American journal of medical genetics. Part A
2021

Interhemispheric Auditory Cortical Synchronization in Asymmetric Hearing Loss.

Ear and hearing
2021

Evolving clinical manifestations of mandibular hypoplasia, deafness, progeroid features, and lipodystrophy syndrome: From infancy to adulthood in a 31-year-old woman.

American journal of medical genetics. Part A
2020

Novel MT-ND Gene Variants Causing Adult-Onset Mitochondrial Disease and Isolated Complex I Deficiency.

Frontiers in genetics
2019

Novel EYA4 variant in Slovak family with late onset autosomal dominant hearing loss: a case report.

BMC medical genetics
2019

Mouse screen reveals multiple new genes underlying mouse and human hearing loss.

PLoS biology
2018

Whole exome sequencing in adult-onset hearing loss reveals a high load of predicted pathogenic variants in known deafness-associated genes and identifies new candidate genes.

BMC medical genomics
2018

Adult-onset Generalized Dystonia as the Main Manifestation of MEGDEL Syndrome.

Tremor and other hyperkinetic movements (New York, N.Y.)
2018

Bi-allelic inactivating variants in the COCH gene cause autosomal recessive prelingual hearing impairment.

European journal of human genetics : EJHG

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

Ainda não temos associações cadastradas para Leucoencefalopatia progressiva de início na idade adulta-surdez de início precoce.

É de uma associação que acompanha esta doença? Fale com a gente →

Doença com base genética

Um médico geneticista pode ajudar no diagnóstico de Leucoencefalopatia progressiva de início na idade adulta-surdez de início precoce e no aconselhamento genético da família.

Vai consultar um especialista? Confirme o registro dele no conselho.
Conselhos e sociedades

Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

Ainda não achamos doenças com sintomas parecidos o suficiente.

Perguntas frequentes

O que as famílias mais perguntam sobre esta doença — cada resposta com a fonte de onde saiu

Respostas geradas por IA a partir das fontes citadas

A causa está ligada a mutações com herança autossômica recessiva no gene KARS1, responsável pela enzima lisina-tRNA ligase. Para manifestar a doença, o indivíduo deve herdar uma cópia alterada do gene de cada um dos pais.

Referências

Fontes citadas no texto, publicações do grafo e bases de dados usadas neste verbete

9 publicações do grafo RarasNet (PubMed) · 4 bases de dados. Títulos, periódicos e PMIDs vêm direto da fonte, sem intermediação de IA.

  1. ORPHA:652532
    Orphanet

Dados compilados pelo RarasNet a partir de fontes abertas (Orphanet, OMIM, MONDO, PubMed/EuropePMC, ClinicalTrials.gov, DATASUS, PCDT/MS). Este conteúdo é informativo e não substitui avaliação médica.

Citar este verbete

Raras. (s.d.). Leucoencefalopatia progressiva de início na idade adulta-surdez de início precoce. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/leucoencefalopatia-progressiva-de-inicio-na-idade-adulta-surdez-de-inicio-precoce

Formato APA. Conteúdo sob CC BY 4.0 — reuso livre com atribuição.

Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar

Compêndio · Raras BR

Leucoencefalopatia progressiva de início na idade adulta-surdez de início precoce

ORPHA:652532 · MONDO:0958094
🇧🇷 Brasil SUS
SIGTAP
2 procedimentos
Geral
Prevalência
<1 / 1 000 000
Casos
8 casos conhecidos
Herança
Autosomal recessive
CID-10
G37.8 · Outras doenças desmielinizantes especificadas do sistema nervoso central
Início
Adult
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C5921954

📋 Origem dos dados

Esta página agrega dados de fontes públicas e oficiais. Dados sobre cobertura no SUS (PCDT, CEAF) são verificados ativamente por agente proativo (ver badge no infobox). Demais dados têm atribuição de fonte + data da última sincronização — clique para abrir o original.

Doença rara (ontologia)
fonte: Orphanet
Identificador unificado
fonte: MONDO
Rara