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Miopatia distal com início tibial anterior
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Introdução

O que você precisa saber de cara

📋

Miopatia distal é um grupo de doenças genéticas raras que causam danos e fraqueza muscular, predominantemente nas mãos e/ou pés. A mutação de muitos genes diferentes pode ser a causa. Muitos tipos envolvem a disferlina.

Publicações científicas
22 artigos
Último publicado: 2026 Feb 12

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
4
pacientes catalogados
Início
Adolescent
+ adult
🏥
SUS: Cobertura mínimaScore: 20%
CID-10: G71.0
🇧🇷Dados SUS / DATASUS2024
2.340
internações/ano
R$ 6.780
custo médio/internação
ESTADOS COM MAIS INTERNAÇÕES
SPRJMGRSPR
PROCEDIMENTOS SIGTAP (2)
0202010694
Sequenciamento completo do exoma (WES)genetic_test
0301070040
Atendimento em reabilitação — doenças rarasrehabilitation
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Entender a doença

Do básico ao detalhe, leia no seu ritmo

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Sinais e sintomas

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

Partes do corpo afetadas

💪
Músculos
11 sintomas
🫘
Rins
1 sintomas

+ 9 sintomas em outras categorias

Características mais comuns

90%prev.
Ausência de disferlina na fibra muscular
Muito frequente (99-80%)
90%prev.
Concentração anormal de creatina quinase circulante
Muito frequente (99-80%)
55%prev.
Mialgia induzida por exercício
Frequente (79-30%)
55%prev.
Fraqueza do músculo tibial
Frequente (79-30%)
55%prev.
Fraqueza muscular proximal progressiva
Frequente (79-30%)
17%prev.
Atrofia dos músculos intrínsecos da mão
Ocasional (29-5%)
21sintomas
Muito frequente (2)
Frequente (3)
Ocasional (4)
Muito raro (4)
Sem dados (8)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 21 características clínicas mais associadas, ordenadas por frequência.

Ausência de disferlina na fibra muscularAbsent muscle fiber dysferlin
Muito frequente (99-80%)90%
Concentração anormal de creatina quinase circulanteAbnormal circulating creatine kinase concentration
Muito frequente (99-80%)90%
Mialgia induzida por exercícioExercise-induced myalgia
Frequente (79-30%)55%
Fraqueza do músculo tibialTibialis muscle weakness
Frequente (79-30%)55%
Fraqueza muscular proximal progressivaProgressive proximal muscle weakness
Frequente (79-30%)55%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico22PubMed
Últimos 10 anos13publicações
Pico20223 papers
Linha do tempo
2026Hoje · 2026🧪 2012Primeiro ensaio clínico📈 2022Ano 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.

DYSFDysferlinDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Key calcium ion sensor involved in the Ca(2+)-triggered synaptic vesicle-plasma membrane fusion. Plays a role in the sarcolemma repair mechanism of both skeletal muscle and cardiomyocytes that permits rapid resealing of membranes disrupted by mechanical stress (By similarity)

LOCALIZAÇÃO

Cell membrane, sarcolemmaCytoplasmic vesicle membraneCell membraneLate endosome membrane

VIAS BIOLÓGICAS (1)
Smooth Muscle Contraction
MECANISMO DE DOENÇA

Muscular dystrophy, limb-girdle, autosomal recessive 2

An autosomal recessive degenerative myopathy characterized by weakness and atrophy starting in the proximal pelvifemoral muscles, with onset in the late teens or later, massive elevation of serum creatine kinase levels and slow progression. Scapular muscle involvement is minor and not present at onset. Upper limb girdle involvement follows some years after the onset in lower limbs.

EXPRESSÃO TECIDUAL(Ubíquo)
Sangue
164.1 TPM
Baço
67.3 TPM
Músculo esquelético
44.4 TPM
Pulmão
30.5 TPM
Cólon sigmoide
23.4 TPM
OUTRAS DOENÇAS (6)
autosomal recessive limb-girdle muscular dystrophy type 2Bdistal myopathy with anterior tibial onsetMiyoshi muscular dystrophy 1autosomal recessive limb-girdle muscular dystrophy
HGNC:3097UniProt:O75923

Variantes genéticas (ClinVar)

1,154 variantes patogênicas registradas no ClinVar.

🧬 DYSF: NM_001130987.2(DYSF):c.1023C>A (p.Tyr341Ter) ()
🧬 DYSF: NM_001130987.2(DYSF):c.240-2A>G ()
🧬 DYSF: NM_001130987.2(DYSF):c.4458del (p.Ile1487fs) ()
🧬 DYSF: NM_001130987.2(DYSF):c.5689del (p.Tyr1897fs) ()
🧬 DYSF: NM_001130987.2(DYSF):c.5628C>A (p.Asp1876Glu) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 304 variantes classificadas pelo ClinVar.

243
61
Patogênica (79.9%)
VUS (20.1%)
VARIANTES MAIS SIGNIFICATIVAS
DYSF: NM_001130987.2(DYSF):c.6020G>A (p.Trp2007Ter) [Pathogenic]
DYSF: NM_001130987.2(DYSF):c.5975del (p.Pro1992fs) [Likely pathogenic]
DYSF: NM_001130987.2(DYSF):c.5680_5681del (p.Asp1894fs) [Pathogenic]
DYSF: NM_001130987.2(DYSF):c.4683dup (p.Asn1562Ter) [Likely pathogenic]
DYSF: NM_001130987.2(DYSF):c.4385dup (p.Asp1463fs) [Likely pathogenic]

Vias biológicas (Reactome)

1 via biológica associada aos genes desta condição.

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Pipeline de tratamentos
Pipeline regulatório — de medicamentos já aprovados a drogas em pesquisa exploratória.
·Pré-clínico1
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 1 ensaio
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Miopatia distal com início tibial anterior

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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

1 ensaios clínicos encontrados.

Distribuição por fase
Ver todos no ClinicalTrials.gov
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Publicações mais relevantes

Timeline de publicações
14 papers (10 anos)
#1

DYSF gene variant spectrum in Arab populations across eight countries: A systematic review.

Biomolecules &amp; biomedicine2026 Feb 12

Dysferlinopathies are a subset of autosomal recessive muscular dystrophies resulting from pathogenic variants in the dysferlin (DYSF) gene. The prevalence of dysferlinopathies remains inadequately defined. This review aims to elucidate the mutational spectrum of DYSF in Arab populations. A systematic search was conducted in PubMed, ScienceDirect, Scopus, and Web of Science up to September 15, 2025. We identified 48 unique DYSF variants documented in the literature across eight Arab countries, resulting in 49 country-entries due to one variant being reported in two countries. The distribution of reported variants was as follows: Saudi Arabia 32.7% (16/49), Algeria 20.4% (10/49), Egypt 20.4% (10/49), Tunisia 10.2% (5/49), Morocco 6.1% (3/49), Libya 4.1% (2/49), Lebanon 4.1% (2/49), and Oman 2.0% (1/49). Clinical presentations were categorized based on phenotype assignments across variants, totaling 52 assignments as some variants were associated with multiple phenotypes: limb-girdle muscular dystrophy, recessive type 2 (LGMDR2) 50% (26/52), proximodistal 15% (8/52), Miyoshi myopathy 8% (4/52), distal myopathy with anterior tibial onset (DMAT) 4% (2/52), and asymptomatic hyperCKemia 4% (2/52). In terms of molecular consequences (denominator = 48 unique variants), frameshift variants constituted 36% (17/48), missense variants 29% (14/48), nonsense variants 15% (7/48), splice donor variants 6% (3/48), splice acceptor variants 4% (2/48), intronic variants 2% (1/48), and synonymous variants 2% (1/48). Documenting these variants across populations facilitates diagnosis and informs future public health strategies. Notably, no cohort study based in Morocco has focused on the genetics of dysferlinopathy; existing Moroccan data are limited to isolated case reports. Dysferlinopathy includes a spectrum of muscle disease characterized by two major phenotypes: Miyoshi muscular dystrophy (MMD) and limb-girdle muscular dystrophy type 2B (LGMD2B); and two minor phenotypes: asymptomatic hyperCKemia and distal myopathy with anterior tibial onset (DMAT). MMD (median age of onset 19 years) is characterized by muscle weakness and atrophy, most marked in the distal parts of the legs, especially the gastrocnemius and soleus muscles. Over a period of years, the weakness and atrophy spread to the thighs and gluteal muscles. The forearms may become mildly atrophic with decrease in grip strength; the small muscles of the hands are spared. LGMD2B is characterized by early weakness and atrophy of the pelvic and shoulder girdle muscles in adolescence or young adulthood, with slow progression. Other phenotypes in this spectrum are scapuloperoneal syndrome and congenital muscular dystrophy. Asymptomatic hyperCKemia is characterized by marked elevation of serum CK concentration only. DMAT is characterized by early and predominant distal muscle weakness, particularly of the muscles of the anterior compartment of the legs. The diagnosis of dysferlinopathy is established in a proband with suggestive findings and biallelic pathogenic variants in DYSF identified by molecular genetic testing. Treatment of manifestations: There is no approved therapy for dysferlinopathy. Treatment is symptomatic only. Management should be tailored to the individual and the specific subtype. Individualized management may include physical therapy, use of mechanical aids, surgical intervention for orthopedic complications, respiratory aids, and social and emotional support. Surveillance: Annual monitoring of muscle strength, physical function, activities of daily living, joint range of motion, balance, and respiratory function, and for evidence of cardiomyopathy for individuals with cardiac involvement. Agents/circumstances to avoid: Weight control to avoid obesity. Dysferlinopathy is inherited in an autosomal recessive manner. If both parents are known to be heterozygous for a DYSF pathogenic variant, each sib of an affected individual has at conception a 25% chance of being affected, a 50% chance of being an asymptomatic carrier, and a 25% chance of being unaffected and not a carrier. Once the DYSF pathogenic variants have been identified in an affected family member, carrier testing for at-risk relatives, prenatal testing for a pregnancy at increased risk, and preimplantation genetic testing are possible.

#2

Tips to Design Effective Splice-Switching Antisense Oligonucleotides for Exon Skipping and Exon Inclusion.

Methods in molecular biology (Clifton, N.J.)2025

Antisense-mediated exon skipping and exon inclusion have proven to be powerful tools for treating neuromuscular diseases. The approval of Exondys 51 (eteplirsen) and Spinraza (nusinersen) for the treatment of patients with Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA) was the most noteworthy accomplishment in 2016. Exon skipping uses short DNA-like molecules called antisense oligonucleotides (AONs) to correct the disrupted reading frame, allowing the production of functional quasi-dystrophin proteins, and ameliorate the progression of the disease. Exon inclusion for SMA employs an AON targeting an intronic splice silencer site to include an exon, which is otherwise spliced-out. Recently, these strategies have also been explored in many other genetic disorders, including dysferlin-deficient muscular dystrophy (e.g., Miyoshi myopathy, MM; limb-girdle muscular dystrophy type 2B, LGMD2B; and distal myopathy with anterior tibial onset, DMAT), laminin α2 chain (merosin)-deficient congenital muscular dystrophy (MDC1A), sarcoglycanopathy (e.g., limb-girdle muscular dystrophy type 2C; LGMD2C), and Fukuyama congenital muscular dystrophy (FCMD). A major challenge in exon skipping and exon inclusion is the difficulty in designing effective AONs. The mechanism of mRNA splicing is highly complex, and the efficacy of AONs are often unpredictable. We will discuss the design of effective AONs for exon skipping and exon inclusion in this chapter.

#3

The Dysferlinopathies Conundrum: Clinical Spectra, Disease Mechanism and Genetic Approaches for Treatments.

Biomolecules2024 Feb 21

Dysferlinopathies refer to a spectrum of muscular dystrophies that cause progressive muscle weakness and degeneration. They are caused by mutations in the DYSF gene, which encodes the dysferlin protein that is crucial for repairing muscle membranes. This review delves into the clinical spectra of dysferlinopathies, their molecular mechanisms, and the spectrum of emerging therapeutic strategies. We examine the phenotypic heterogeneity of dysferlinopathies, highlighting the incomplete understanding of genotype-phenotype correlations and discussing the implications of various DYSF mutations. In addition, we explore the potential of symptomatic, pharmacological, molecular, and genetic therapies in mitigating the disease's progression. We also consider the roles of diet and metabolism in managing dysferlinopathies, as well as the impact of clinical trials on treatment paradigms. Furthermore, we examine the utility of animal models in elucidating disease mechanisms. By culminating the complexities inherent in dysferlinopathies, this write up emphasizes the need for multidisciplinary approaches, precision medicine, and extensive collaboration in research and clinical trial design to advance our understanding and treatment of these challenging disorders.

#4

Dysferlinopathy in Tunisia: clinical spectrum, genetic background and prognostic profile.

Neuromuscular disorders : NMD2023 Oct

Dysferlinopathy is a rare group of hereditary muscular dystrophy with an autosomal recessive mode of inheritance caused by a mutation in the DYSF gene. It encodes for the dysferlin protein, which has a crucial role in multiple cellular processes, including muscle fiber membrane repair. This deficit has heterogeneous clinical presentations. In this study, we collected 20 Tunisian patients with a sex ratio of 1 and a median age of 50.5 years old (Interquartile range (IQR) = [36,5-54,75]). They were followed for periods ranging from 5 to 48 years. The median age at onset was 17 years old (IQR = [16,8-28,4]). Five major phenotypes were identified: Limb-girdle muscular dystrophy (LGMDR2) (35%), a proximodistal phenotype (35%), Miyoshi myopathy (10%),  Distal myopathy with anterior tibial onset (DMAT) (10%), and asymptomatic HyperCKemia (10%). At the last evaluation, more than half of patients (55%) were on wheelchair. Loss of ambulation occurred generally during the fourth decade. After 20 years of disease progression, two patients with a proximodistal phenotype (10%) developed dilated cardiomyopathy and mitral valve regurgitation. Restrictive respiratory syndrome was observed in three patients (DMAT: 1 patient, proximodistal phenotype: 1 patient, LGMDR2: 1 patient). Genetic study disclosed five mutations. We observed clinical heterogeneity between families and even within the same family. Disease progression was mainly slow to intermediate regardless of the phenotype.

#5

Miyoshi Muscular Dystrophy Type 1 with Mutated DYSF Gene Misdiagnosed as Becker Muscular Dystrophy: A Case Report and Literature Review.

Genes2023 Jan 12

Dysferlinopathy covers a spectrum of muscle disorder categorized by two major phenotypes, namely Miyoshi muscular dystrophy type 1 (MMD1, OMIM #254130) and limb-girdle muscular dystrophy autosomal recessive 2 (LGMDR2, OMIM #253601), and two minor symptoms, including asymptomatic hyperCKemia and distal myopathy with anterior tibial onset (DMAT, OMIM #606768). We report the first Korean MMD1 misdiagnosed as Becker muscular dystrophy (BMD), which was caused by a combination of compound heterozygous c.663 + 1G > C and p.Trp992Arg of the DYSF gene. A 70-year-old male previously diagnosed with BMD was admitted for genetic counseling. Since he was clinically suspected to have dysferlinopathy but not BMD, targeted panel sequencing was performed to discover the potential hereditary cause of the suspected muscular dystrophy in the proband. Consequently, two pathogenic single nucleotide variants of the DYSF gene, c.663 + 1G > C (rs398123800) and p.Trp992Arg (rs750028300), associated with dysferlinopathy were identified. These variants were previously reported with variant allele frequencies of 0.000455 (c.663 + 1G > C) and 0.000455 (c.2974T > C; p.Trp992Arg) in the Korean population. This report emphasizes the need for common variant screening in the diagnostic algorithms of certain muscle disorders or gene panels with potential pathogenic effects and high rates of recurrent variants.

Publicações recentes

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Associações

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Comunidades

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Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

Ordenadas pelo número de sintomas em comum.

Referências e fontes

Bases de dados externas citadas neste artigo

Publicações científicas

Artigos indexados no PubMed ligados a esta doença no grafo RarasNet — título, periódico e PMID direto da fonte, sem intermediação de IA.

  1. DYSF gene variant spectrum in Arab populations across eight countries: A systematic review.
    Biomolecules &amp; biomedicine· 2026· PMID 41677014mais citado
  2. Tips to Design Effective Splice-Switching Antisense Oligonucleotides for Exon Skipping and Exon Inclusion.
    Methods in molecular biology (Clifton, N.J.)· 2025· PMID 40720012mais citado
  3. The Dysferlinopathies Conundrum: Clinical Spectra, Disease Mechanism and Genetic Approaches for Treatments.
    Biomolecules· 2024· PMID 38540676mais citado
  4. Dysferlinopathy in Tunisia: clinical spectrum, genetic background and prognostic profile.
    Neuromuscular disorders : NMD· 2023· PMID 37716854mais citado
  5. Miyoshi Muscular Dystrophy Type 1 with Mutated DYSF Gene Misdiagnosed as Becker Muscular Dystrophy: A Case Report and Literature Review.
    Genes· 2023· PMID 36672942mais citado
  6. Dysferlinopathy.
    · 1993· PMID 20301480recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:178400(Orphanet)
  2. OMIM OMIM:606768(OMIM)
  3. MONDO:0011721(MONDO)
  4. GARD:17080(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q66084882(Wikidata)

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.

Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar

Miopatia distal com início tibial anterior
Compêndio · Raras BR

Miopatia distal com início tibial anterior

ORPHA:178400 · MONDO:0011721
🇧🇷 Brasil SUS
Internações
2.340/ano
Prevalência BR
1:3500 (homens)
Custo SUS
R$ 6.780/internação
Dados
DATASUS 2024
Geral
Prevalência
<1 / 1 000 000
Casos
4 casos conhecidos
Herança
Autosomal recessive
CID-10
G71.0 · Distrofia muscular
CID-11
Início
Adolescent, Adult
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1847532
Wikidata
Papers 10a
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