A fibromatose hialina juvenil (FJ) é um tumor raro de tecidos moles, caracterizado por lesões cutâneas papulonodulares (especialmente ao redor da cabeça e pescoço), massas de tecidos moles, hipertrofia gengival, contraturas articulares e lesões ósseas osteolíticas em graus variáveis. As contraturas articulares podem incapacitar os pacientes e atrasar o desenvolvimento motor normal se ocorrerem na infância. A hiperplasia gengival grave pode interferir na alimentação e atrasar a dentição. A análise histopatológica dos tecidos envolvidos revela cordões de células fusiformes incorporadas em um material amorfo e hialino. A ICJ é uma forma leve de hialinose sistêmica infantil.
Introdução
O que você precisa saber de cara
A fibromatose hialina juvenil (FJ) é um tumor raro de tecidos moles, caracterizado por lesões cutâneas papulonodulares (especialmente ao redor da cabeça e pescoço), massas de tecidos moles, hipertrofia gengival, contraturas articulares e lesões ósseas osteolíticas em graus variáveis. As contraturas articulares podem incapacitar os pacientes e atrasar o desenvolvimento motor normal se ocorrerem na infância. A hiperplasia gengival grave pode interferir na alimentação e atrasar a dentição. A análise histopatológica dos tecidos envolvidos revela cordões de células fusiformes incorporadas em um material amorfo e hialino. A ICJ é uma forma leve de hialinose sistêmica infantil.
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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Sinais e sintomas
O que aparece no corpo e com que frequência cada sintoma acontece
Partes do corpo afetadas
+ 5 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 16 características clínicas mais associadas, ordenadas por frequência.
Linha do tempo da pesquisa
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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.
Necessary for cellular interactions with laminin and the extracellular matrix (Microbial infection) Receptor for the protective antigen (PA) of B.anthracis (PubMed:12700348, PubMed:15243628, PubMed:15326297). Binding of PA leads to heptamerization of the receptor-PA complex (PubMed:12700348, PubMed:15243628, PubMed:15326297). Upon binding of the PA of B.anthracis, the complex moves to glycosphingolipid-rich lipid rafts, where it is internalized via a clathrin-dependent pathway (PubMed:12551953,
Cell membraneEndoplasmic reticulum membraneSecreted
Hyaline fibromatosis syndrome
An autosomal recessive syndrome characterized by abnormal growth of hyalinized fibrous tissue usually affecting subcutaneous regions on the scalp, ears, neck, face, hands, and feet. The lesions appear as pearly papules or fleshy nodules. Additional features include gingival hypertrophy, progressive joint contractures resulting in severe limitation of mobility, osteopenia, and osteoporosis. Disease severity is variable. Some individuals manifest symptoms in infancy and have additional visceral or systemic involvement. Hyaline deposits in multiple organs, recurrent infections and intractable diarrhea often lead to early death. Surviving children may suffer from severely reduced mobility due to joint contractures. Other patients have later onset of a milder disorder affecting only the face and digits.
Variantes genéticas (ClinVar)
67 variantes patogênicas registradas no ClinVar.
Classificação de variantes (ClinVar)
Distribuição de 2 variantes classificadas pelo ClinVar.
Vias biológicas (Reactome)
1 via biológica associada aos genes desta condição.
Diagnóstico
Os sinais que médicos procuram e os exames que confirmam
Tratamento e manejo
Remédios, cuidados de apoio e o que precisa acompanhar
Onde tratar no SUS
Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)
🇧🇷 Atendimento SUS — Juvenile hyaline fibromatosis
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Pesquisa ativa
Ensaios clínicos abertos e novidades científicas recentes
Ensaios em destaque
Pesquisa e ensaios clínicos
3 ensaios clínicos encontrados.
Publicações mais relevantes
Juvenile Hyaline Fibromatosis Syndrome: A Novel Variant in the ANTXR2 Gene Causing Severe Phenotype.
Hyaline fibromatosis syndrome (HFS) is an autosomal recessive disorder caused by variants in the ANTXR2 gene. Clinically, HFS is characterized by papular and nodular skin lesions, gingival hyperplasia, joint contractures, and bone involvement in variable degrees. In this report, we present a 3-year-old Syrian boy with HFS, detailing his clinical and genetic profile, furthering the understanding of genotype-phenotype correlation in the ANTXR2 gene and HFS.
Unraveling Juvenile Hyaline Fibromatosis: A Case of Novel ANTXR2 Mutations Associated with Subcutaneous Masses and Hydronephrosis.
Genetic Insights Into Hyaline Fibromatosis Syndrome: A Case Report of an ANTXR2 Mutation Featuring a Rare Variant c.697+1G>A.
Hyaline fibromatosis syndrome (HFS) is a rare genetic disorder encompassing juvenile hyaline fibromatosis (JHF) and infantile systemic hyalinosis (ISH), caused by mutations in the anthrax toxin receptor 2 gene (ANTXR2). This condition leads to the accumulation of hyaline plaques in the skin and organs, resulting in symptoms such as skin lesions, joint contractures, and digestive issues, often culminating in early mortality due to infections or diarrhea. By 2005, 20 mutations in ANTXR2 linked to ISH and JHF had been documented, impairing cellular adhesion to the laminin matrix. In this study, we present a case of a 6-month-old Iranian female of western Asian ethnicity, born to consanguineous parents. She exhibited hyperpigmentation of the proximal interphalangeal (PIP) joints, knee flexion contractures, persistent diarrhea, and failure to thrive. Initial assessments suggested arthrogryposis; however, the presence of hyperpigmented nodules and perianal plaques prompted further investigation. Genetic analysis confirmed a homozygous mutation in ANTXR2 and incidental heterozygous mutations in the HEXA and PAH genes. The patient will undergo regular monitoring and may require immunosuppressive therapy and orthopedic interventions. Hyaline fibromatosis syndrome presents unique diagnostic challenges due to its overlap with other conditions like arthrogryposis. While arthrogryposis typically lacks systemic symptoms, HFS is marked by significant pain and systemic manifestations due to hyaline deposits in tissues. The case presented aligns with existing literature regarding HFS characteristics, including joint contractures and skin lesions. The identification of the c.697+1G>A mutation at a splice site within the ANTXR2 gene highlights potential mechanisms contributing to HFS pathology. This finding emphasizes the necessity for comprehensive genetic profiling when diagnosing rare syndromes. Furthermore, low allele frequencies of this variant across population databases underscore its rarity and potential significance in disease manifestation. Hyaline fibromatosis syndrome (HFS) is an uncommon autosomal recessive disorder that is marked by notable clinical features, such as the deposition of hyaline material in various tissues, joint contractures, and systemic complications. The case discussed illustrates the diagnostic challenges associated with HFS, particularly in a young patient who presented with atypical symptoms that initially indicated arthrogryposis. Genetic analysis revealed a homozygous mutation in the ANTXR2 gene, specifically the c.697+1G>A variant, which interferes with normal splicing and results in the absence of functional protein. This observation emphasizes the critical role of genetic testing in the precise diagnosis of rare syndromes and in differentiating them from other hereditary disorders.
Recurrent Giant Subcutaneous Tumor in Juvenile Hyaline Fibromatosis.
This case report presents a 5-year-old boy diagnosed with juvenile hyaline fibromatosis (JHF), an extremely rare autosomal recessive disorder characterized by the abnormal accumulation of collagen. The patient exhibited a recurrent giant subcutaneous tumor measuring 20 cm in diameter, along with multiple tumors in the oral cavity, gingiva, and joints, leading to significant facial deformity and functional impairments. Previous surgeries at ages 1 and 2 for tumor removal resulted in recurrence. Surgical intervention was performed to excise the large tumor and alleviate symptoms. Pathologic analysis confirmed the diagnosis of JHF. This case highlights the challenges in managing JHF and the need for multidisciplinary approaches in treatment.
Hyaline Fibromatosis Syndrome Presenting with Nasal Mass: A Case Report.
Hyaline fibromatosis syndrome (HFS) is a rare, autosomally-recesfvsive disease characterized by papulonodular skin lesions, soft tissue masses, joint contractures, gingival overgrowth, and osteolytic bone lesions. Mutations in capillary morphogenesis gene 2 are responsible for both these conditions. Generally, an autosomal recessive pattern is assumed to be the most common mode of inheritance. Here, we report an unusual case of a twenty-three-year-old female patient with HFS who reported with a chief complaint of growing nasal mass for three months. There was no history of pain or bleeding associated with the nasal mass. Due to the growing mass, she experienced right nasal obstruction, which compromised her quality of life. There was an unremarkable family history. Her physical examination revealed multiple asymptomatic pinkish-white papulonodular lesions located at multiple sites. Intra orally, she had generalized gingival enlargement. Her nasal examination revealed a right sided nasal mass, bright red in color. The lesion was soft on palpation. All the results of hematological and biochemical tests were normal. However, skeletal radiographic examination showed the joint contractures on her knees and elbows without the presence of osteolytic bone lesions. The nasal lesion was surgically excised and histopathological examination revealed features suggestive of HFS.
Publicações recentes
Hyaline Fibromatosis Syndrome.
Juvenile Hyaline Fibromatosis Syndrome: A Novel Variant in the ANTXR2 Gene Causing Severe Phenotype.
Genetic Insights Into Hyaline Fibromatosis Syndrome: A Case Report of an ANTXR2 Mutation Featuring a Rare Variant c.697+1G>A.
Recurrent Giant Subcutaneous Tumor in Juvenile Hyaline Fibromatosis.
Unraveling Juvenile Hyaline Fibromatosis: A Case of Novel ANTXR2 Mutations Associated with Subcutaneous Masses and Hydronephrosis.
📚 EuropePMC138 artigos no totalmostrando 45
Juvenile Hyaline Fibromatosis Syndrome: A Novel Variant in the ANTXR2 Gene Causing Severe Phenotype.
Pediatric dermatologyGenetic Insights Into Hyaline Fibromatosis Syndrome: A Case Report of an ANTXR2 Mutation Featuring a Rare Variant c.697+1G>A.
Clinical case reportsRecurrent Giant Subcutaneous Tumor in Juvenile Hyaline Fibromatosis.
The Journal of craniofacial surgeryUnraveling Juvenile Hyaline Fibromatosis: A Case of Novel ANTXR2 Mutations Associated with Subcutaneous Masses and Hydronephrosis.
Pediatric blood & cancerAnti-proliferative impact of resveratrol on gingival fibroblasts from juvenile hyaline fibromatosis.
Clinical oral investigationsHyaline Fibromatosis Syndrome: Early Outcomes Following Major Craniofacial Mass Excision.
The Journal of craniofacial surgeryBeyond Skin Deep: A Case Report of Infantile Systemic Hyalinosis in a Six-Month-Old Infant.
CureusHyaline fibromatosis syndrome: a rare, yet recognizable syndrome.
The Turkish journal of pediatricsInvestigating the Influence of ANTXR2 Gene Mutations on Protective Antigen Binding for Heightened Anthrax Resistance.
GenesHyaline Fibromatosis Syndrome Diagnosed by Whole Genome Sequencing.
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & PractitionersAtypical Presentation of Lip Nodules in Clinically Diagnosed Juvenile Hyaline Fibromatosis.
CureusHypercalcemia as a rare presentation of hyaline fibromatosis syndrome from different Sudanese families: two case reports.
Journal of medical case reportsAnesthetic Management of a Patient With Juvenile Hyaline Fibromatosis: A Case Report Written With the Assistance of the Large Language Model ChatGPT.
CureusHyaline Fibromatosis Syndrome Presenting with Nasal Mass: A Case Report.
Ear, nose, & throat journalOverlapping Hyaline Fibromatosis Syndrome: A Rare Case of Juvenile Hyaline Fibromatosis and Infantile Systemic Hyalinosis.
CureusImaging manifestations of juvenile hyaline fibromatosis: a case report and literature review.
BJR case reportsJuvenile Hyaline Fibromatosis: Report of a Case with a Novel ANTXR2 Gene Mutation.
The American journal of case reportsHyaline fibromatosis syndrome with a novel 4.41-kb deletion in ANTXR2 gene: A case report and literature review.
Molecular genetics & genomic medicineThe diagnostic challenge of juvenile hyaline fibromatosis, a case report with literature reviews.
International journal of surgery case reportsJuvenile hyaline fibromatosis: a rare oral disease case report and literature review.
Translational pediatricsJuvenile hyaline fibromatosis: A clinicopathological study of five cases.
Annals of diagnostic pathologyMultiple Scalp Tumors in Juvenile Hyaline Fibromatosis with Antxr-2 Mutation in a Family.
Indian journal of dermatologyAnesthetic Management of a Juvenile Hyaline Fibromatosis Patient With Trismus and Cervical Movement Limitation.
Anesthesia progressAtypical Presentation of Juvenile Hyaline Fibromatosis of Hands.
The Journal of hand surgeryJuvenile Hyaline Fibromatosis: Literature Review and a Case Treated With Surgical Excision and Corticosteroid.
CureusHyaline fibromatosis syndrome: A rare case of multifocal intra-articular involvement.
Clinical imagingClinical aspects of Hyaline Fibromatosis Syndrome and identification of a novel mutation.
Molecular genetics & genomic medicineJuvenile Hyaline Fibromatosis Management With a Diode Laser: A Rare Case Report.
Journal of lasers in medical sciencesJuvenile Hyaline Fibromatosis.
Mayo Clinic proceedingsJuvenile hyaline fibromatosis: an unusual clinical presentation.
Dermatology online journalJuvenile hyaline fibromatosis in siblings.
Indian journal of pathology & microbiologyHyaline fibromatosis syndrome: Clinical update and phenotype-genotype correlations.
Human mutationProtein-losing enteropathy and joint contractures caused by a novel homozygous ANTXR2 mutation.
Advances in genomics and genetics[Identification of novel compound heterozygous mutations in the ANTXR2 gene in a Chinese patient with juvenile hyaline fibromatosis].
Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical geneticsHyaline fibromatosis syndrome (juvenile hyaline fibromatosis): whole-body MR findings in two siblings with different subcutaneous nodules distribution.
Skeletal radiologyJuvenile Hyaline Fibromatosis- A Rare Autosomal Recessive Disease.
Journal of clinical and diagnostic research : JCDRJuvenile Hyaline Fibromatosis: A 10-year Follow-up.
Indian journal of dermatologyDiagnosis implications of the whole genome sequencing in a large Lebanese family with hyaline fibromatosis syndrome.
BMC geneticsHyaline Fibromatosis Syndrome: A Rare Inherited Disorder.
Indian journal of dermatologyHyaline fibromatosis syndrome: cutaneous manifestations.
Anais brasileiros de dermatologiaJuvenile hyaline fibromatosis: report of a rare case at an advanced stage with osteosclerosis and scoliosis.
International journal of dermatologySystemic Hyalinosis With Heterozygous CMG2 Mutations: A Case Report and Review of Literature.
The American Journal of dermatopathologyUnusual cause for gum hypertrophy and skin nodules in a child.
BMJ case reportsJuvenile Hyaline Fibromatosis: Impact of Periodontal Care on Quality of Life and a Patient Perspective.
Dental update[Hyaline fibromatosis syndrome: case report of two siblings].
Archivos argentinos de pediatriaAssociações
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Comunidades
Grupos ativos de quem convive com esta doença aqui no Raras
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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.
- Juvenile Hyaline Fibromatosis Syndrome: A Novel Variant in the ANTXR2 Gene Causing Severe Phenotype.
- Unraveling Juvenile Hyaline Fibromatosis: A Case of Novel ANTXR2 Mutations Associated with Subcutaneous Masses and Hydronephrosis.
- Genetic Insights Into Hyaline Fibromatosis Syndrome: A Case Report of an ANTXR2 Mutation Featuring a Rare Variant c.697+1G>A.
- Recurrent Giant Subcutaneous Tumor in Juvenile Hyaline Fibromatosis.
- Hyaline Fibromatosis Syndrome Presenting with Nasal Mass: A Case Report.
- Hyaline Fibromatosis Syndrome.
Bases de dados e fontes oficiais
Identificadores e referências canônicas usadas para montar este verbete.
- ORPHA:2028(Orphanet)
- MONDO:0016071(MONDO)
- GARD:16583(GARD (NIH))
- Variantes catalogadas(ClinVar)
- Busca completa no PubMed(PubMed)
- Q6318955(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
