Síndrome de Klippel–Trénaunay, anteriormente denominada Síndrome de Klippel–Trénaunay–Weber e, às vezes, angio-osteo-hipertrofia ou hipertrofia hemangiectática, é uma rara síndrome congênita na qual vasos sanguíneos e linfáticos formam-se de maneira anômala. Suas três principais características são mancha em vinho do Porto, também chamadas de hemangioma capilar, malformações venosas e linfáticas, além de hipertrofia de tecidos moles do membro afetado. Assemelha-se, apesar de ser distinta desta, com a Síndrome de Parkes Weber.
Introdução
O que você precisa saber de cara
Síndrome rara de malformação vascular complexa congénita caracterizada por crescimento excessivo de um membro (mais comummente uma perna) envolvendo ossos e tecidos moles, em associação com malformações capilares, geralmente sob a forma de manchas vinho-do-Porto e múltiplas fístulas arteriovenosas com derivação arteriovenosa de alto fluxo. Estas últimas podem também levar a outras complicações graves, incluindo hemorragias anormais e insuficiência cardíaca. Também podem estar presentes malformações linfáticas.
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
+ 23 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 46 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 dominant, Not applicable.
GTPase-activating protein (GAP) that stimulates the intrinsic GTPase activity of Ras proteins, such as NRAS, facilitating their transition from the active GTP-bound state to the inactive GDP-bound state, thereby terminating Ras signaling
Cytoplasm
Variantes genéticas (ClinVar)
366 variantes patogênicas registradas no ClinVar.
Classificação de variantes (ClinVar)
Distribuição de 1 variantes classificadas pelo ClinVar.
Vias biológicas (Reactome)
5 vias biológicas associadas 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 — Síndrome Parkes Weber
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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
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Outros ensaios clínicos
29 ensaios clínicos encontrados, 3 ativos.
Publicações mais relevantes
Cerebrovascular Malformations Associated With Hereditary Hemorrhagic Telangiectasia and HHT-Like Syndromes: A Comparative Overview.
Hereditary hemorrhagic telangiectasia (HHT) is an autosomal dominant vascular disorder marked by mucocutaneous telangiectasias, recurrent epistaxis, and visceral arteriovenous malformations (AVMs). Neurologic risks include brain AVMs and hemorrhagic stroke. Several rare genetic and sporadic syndromes ("HHT-like" syndromes) share overlapping vascular features, complicating diagnosis. Differentiating these conditions is essential for accurate neurovascular risk assessment. A comprehensive literature review (PubMed, Scopus, Embase, Google Scholar; 1990-2025) targeted cerebrovascular manifestations of HHT and related syndromes. Key entities included Wyburn-Mason syndrome, Cobb syndrome, Klippel-Trénaunay syndrome (KTS), neurofibromatosis type 1 (NF1), PHACE(S) syndrome, capillary malformation-AVM (CM-AVM), Parkes Weber syndrome (PWS), juvenile polyposis/HHT overlap (JP-HHT), HHT type 5 (BMP9/GDF2), PTEN hamartoma tumor syndrome (PHTS), and blue rubber bleb nevus syndrome (BRBNS). Data on gene variants, lesion types, neuroimaging, stroke risk, and neurologic outcomes were synthesized. High-flow cerebrovascular malformations similar to HHT are prominent in Wyburn-Mason syndrome, CM-AVM, and PWS, conferring a substantial hemorrhagic stroke risk. NF1 and PHACE(S) primarily feature occlusive arteriopathies linked to ischemic events. KTS, BRBNS, and PHTS predominantly show low- or mixed-flow anomalies with lower CNS hemorrhagic risk but increased thrombotic complications. JP-HHT carries added gastrointestinal cancer risk via SMAD4 variants, while HHT type 5 often presents incompletely. Genetic testing and tailored neuroimaging are critical for differentiation. Although many syndromes mimic HHT, few combine mucosal telangiectasias, high-flow AVMs, and recurrent hemorrhage. Integrating clinical, imaging, and genetic data enables precise diagnosis, risk stratification, and personalized management.
High-Flow and Low-Flow Cerebrovascular Malformations Syndromes Associated With Klippel-Trénaunay and Parkes-Weber Syndromes. A Systematic Review.
Klippel-Trénaunay syndrome (KTS) and Parkes Weber syndrome (PWS) are rare vascular disorders that share clinical features such as limb overgrowth and capillary malformations. However, they differ in the vascular flow dynamics. KTS is a low-flow malformation, while PWS is characterized by high-flow arteriovenous shunts. A systematic review of the literature was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, focusing on case reports and series describing patients with confirmed KTS or PWS and documented cerebrovascular or spinal vascular findings. Studies were analyzed for type and location of central nervous system lesions, and genetic data were reviewed where available. Forty studies comprising 76 patients met inclusion criteria. In KTS (61 patients), cerebrovascular anomalies were mostly venous in nature, including developmental venous anomalies, venous malformations, and cavernomas, with no spinal arteriovenous malformations reported. In contrast, PWS (n = 15) was exclusively associated with high-flow spinal arteriovenous malformations or fistulas, primarily affecting the thoracolumbar region. No cerebral lesions were identified in PWS. PIK3CA mutations were observed in KTS cases, while Ras GTPase-activating protein 1 mutations were more common in PWS. Cerebrovascular findings might offer valuable diagnostic insight into distinguishing KTS from PWS. These vascular recurrent findings, coupled with genetic testing, can enhance diagnostic precision and guide appropriate management strategies for these complex vascular syndromes.
Parkes Weber syndrome, a rare case of pulmonary hypertension: a case report.
Parkes Weber syndrome (PWS) is a rare congenital vascular syndrome characterized by complex capillary malformation , venous malformation, lymphatic malformation, and arteriovenous malformation (AVM) in the affected limb with overgrowth; the latter is a pathognomonic feature that differentiates it from Klippel-Trenaunay syndrome. Cardiovascular complications include increased cardiac output, which promotes the onset of heart failure and the development of pulmonary hypertension (PAH), significantly impairing the quality of life due to severe functional class deterioration. However, these complications are currently treatable by ligation or removal of malformations. A 33-year-old male with a long-standing, progressively enlarging AVM of the right upper limb presented with necrosis and haemorrhage, leading to hypovolemic shock. Angiography revealed an AVM involving the subclavian, axillary, and brachial arteries, necessitating embolization and surgical interventions. Six years later, he developed distal finger necrosis, requiring infracondylar amputation. He later presented with stump infection, purulent discharge, orthopnoea, jugular venous distension, a loud second heart sound, and a holosystolic murmur in the tricuspid region. Echocardiography and catheterization confirmed PAH and a high-flow arteriovenous fistula. Multidisciplinary evaluation led to definitive amputation and PAH treatment. Postoperatively, PAH resolved, and the patient was discharged with ongoing follow-up, showing significant improvement. This case report highlights the importance of a multidisciplinary approach in managing PWS, especially when endovascular interventions are not feasible owing to the diffuse nature of the AVM. It also emphasizes the potential for reversing severe complications through definitive surgical intervention in complex cases of PWS.
Case Report: The Parkes-Weber syndrome in the patient who underwent coronary surgery.
Parkes-Weber Syndrome is a rare congenital vascular abnormality characterized by aneurismatic illness of blood arteries in the afflicted limb, as well as hypertrophy, ulceration, ischemia, and high-output heart failure. Imaging investigations are required to provide a diagnosis, with contrast arteriography being the gold standard. The majority of treatment options are endovascular, with surgical excision for arteriovenous malformations and limb amputation as alternatives. We describe a 73-year-old male patient with mainly asymptomatic PWS, coronary disease, and borderline EF (45%) who had CABG surgery. In individuals with established CAD and other cardiac disorders, it is critical to identify additional diseases or syndromes that might have a compounding effect on the heart, such as PWS and high-output heart failure.
Analysis of the application value of endovascular interventional technology in the diagnosis and treatment of vascular malformations with limb hypertrophy.
This study aims to retrospectively analyze the clinical data of children diagnosed with vascular malformations associated with limb hypertrophy, treated at the General Surgery department of Liangjiang Branch of the Children's Hospital Affiliated to Chongqing Medical University. Additionally, it seeks to explore the diagnostic and therapeutic value of endovascular interventions for this condition. This study conducts a retrospective analysis of the medical records of children with vascular malformations accompanied by limb hypertrophy who received treatment in our department. We summarize their medical history characteristics, clinical manifestations, auxiliary examinations, DSA (Digital Subtraction Angiography) results, intraoperative treatment methods, and follow-up data collected at least 1 year post-surgery to evaluate the diagnostic and therapeutic value of these interventions. This study included a total of 19 children, comprising 10 females and 9 males. The average age was 4 years, while the median age was 3 years and 1 month. The primary site of onset was the lower extremities. The disease types predominantly included arteriovenous malformation (AVM), Klippel-Trenaunay syndrome (KTs), and Parkes-Weber syndrome (PWs). All children underwent digital subtraction angiography (DSA) surgery. During the operation, they were categorized into high-flow and low-flow groups based on their blood flow characteristics, and distinct treatment plans were implemented for each group. Postoperative follow-up revealed a significant decrease in limb skin temperature in the high-flow group before and after treatment (t = 9.266, p = 0.000), while the limb circumference in the low-flow group also decreased significantly (t = 5.701, p = 0.002). Additionally, differences were observed in the relief of symptoms such as limb limping, skin plaques, pain, and pruritus between the two groups. During the postoperative follow-up period, only one child with AVM experienced recanalization 1 year after the operation and subsequently underwent reoperation. Vascular malformations associated with limb hypertrophy are relatively rare in clinical practice. Therefore, it is essential to enhance our understanding of these conditions to facilitate early diagnosis and treatment. Endovascular interventional therapy offers significant advantages for the diagnosis and treatment of this disease, making it worthy of wider adoption in clinical settings. Furthermore, treatment plans should be tailored to the specific clinical characteristics of each patient.
Publicações recentes
Cerebrovascular Malformations Associated With Hereditary Hemorrhagic Telangiectasia and HHT-Like Syndromes: A Comparative Overview.
Ruptured Axillo Brachial Aneurysmosis and Vessel Tortuosity: A Neglected Parkes-Weber Syndrome.
High-Flow and Low-Flow Cerebrovascular Malformations Syndromes Associated With Klippel-Trénaunay and Parkes-Weber Syndromes. A Systematic Review.
Parkes Weber syndrome, a rare case of pulmonary hypertension: a case report.
A leg ulcer revealing Parkes Weber syndrome in a child.
📚 EuropePMC120 artigos no totalmostrando 70
Cerebrovascular Malformations Associated With Hereditary Hemorrhagic Telangiectasia and HHT-Like Syndromes: A Comparative Overview.
European journal of neurologyRuptured Axillo Brachial Aneurysmosis and Vessel Tortuosity: A Neglected Parkes-Weber Syndrome.
European journal of vascular and endovascular surgery : the official journal of the European Society for Vascular SurgeryHigh-Flow and Low-Flow Cerebrovascular Malformations Syndromes Associated With Klippel-Trénaunay and Parkes-Weber Syndromes. A Systematic Review.
Pediatric neurologyParkes Weber syndrome, a rare case of pulmonary hypertension: a case report.
European heart journal. Case reportsA leg ulcer revealing Parkes Weber syndrome in a child.
The Pan African medical journalCase Report: The Parkes-Weber syndrome in the patient who underwent coronary surgery.
Frontiers in cardiovascular medicineAnalysis of the application value of endovascular interventional technology in the diagnosis and treatment of vascular malformations with limb hypertrophy.
Scientific reportsMultisegmental spinal arteriovenous malformation associated with the Parkes-Weber syndrome: A case report and literature review.
MedicineSyndromic capillary malformation with leg length discrepancy: Parkes-Weber syndrome treated by embolization, chemotherapy and Ilizarov technique.
HereditasTrans-arterial omental flap protection for infected femoral artery aneurysm in a patient with Parkes-Weber syndrome.
Journal of vascular surgery cases and innovative techniquesExtracranial arteriovenous malformations: a 10-year experience at a German vascular anomaly center and evaluation of diagnostic imaging for endovascular therapy assessment.
Frontiers in medicineNovel postzygotic RASA1 mutation in a patient with Parkes Weber syndrome: A case report and literature review.
Clinical case reportsPseudoaneurysm formation after embolization of giant arteriovenous malformation of the lower limb associated with Parkes Weber syndrome: A case report and literature review.
Radiology case reportsPediatric Limb Asymmetry: A Unique Presentation of Angioosteohypertrophic Syndrome.
CureusDermato-Radiological Evaluation of Congenital Limb Overgrowth Vascular Syndromes.
Indian dermatology online journalRare Presentation of the Vein of Servelle in a Case of Klippel-Trenaunay Syndrome.
CureusPerfusion management during cardiopulmonary bypass in a patient with high cardiac output due to arteriovenous malformations.
European journal of cardio-thoracic surgery : official journal of the European Association for Cardio-thoracic SurgeryParkes Weber syndrome: a rare cause of foot drop.
BMJ case reportsA rare case report of a Servelle-Martorell syndrome patient.
International journal of surgery case reportsVascular Anomaly Syndromes in the ISSVA Classification System: Imaging Findings and Role of Interventional Radiology in Management.
Radiographics : a review publication of the Radiological Society of North America, IncAn autopsy case of Parkes-Weber syndrome with high-output heart failure: Hemodynamic alterations following treatment for arteriovenous fistulas.
Journal of cardiology casesClinical and Molecular Spectrum of Sporadic Vascular Malformations: A Single-Center Study.
BiomedicinesA Rare Cause of Chronic Leg Ulcer in Childhood: Parkes-Weber Syndrome.
The international journal of lower extremity woundsComplex vascular anomalies and tissue overgrowth of limbs associated with increased skin temperature and peripheral venous dilatation: parks weber syndrome or PROS?
HereditasVascular Birthmarks as a Clue for Complex and Syndromic Vascular Anomalies.
Frontiers in pediatricsClinical presentation of simple and combined or syndromic arteriovenous malformations.
Journal of vascular surgery. Venous and lymphatic disordersParkes Weber syndrome with lymphedema caused by a somatic KRAS variant.
Cold Spring Harbor molecular case studiesParkes-Weber syndrome in the emergency department.
BMJ case reportsTrue radial artery aneurysm in a patient with somatic mosaicism for a mutation in platelet-derived growth factor receptor β gene.
Journal of vascular surgery cases and innovative techniquesPulsatile varicose veins: an uncommon presentation of a common condition.
Jornal vascular brasileiroCombined surgical and endovascular treatment for spinal arteriovenous fistula associated with Parkes Weber syndrome.
Child's nervous system : ChNS : official journal of the International Society for Pediatric NeurosurgeryComputational fluid dynamics modeling aiding surgical planning in a toddler with Parkes Weber syndrome.
Journal of pediatric surgery case reportsParkes-Weber Syndrome and double orifice atrial septal defect as a combined rare cause of severe pulmonary hypertension.
The international journal of cardiovascular imagingParkes-Weber Syndrome with Spinal Arteriovenous Fistula in Childhood.
Pediatric neurosurgeryMajor Limb Amputation in Parkes-Weber Syndrome With Refractory Ulceration: A Case Report and Literature Review.
The international journal of lower extremity woundsParkes-Weber syndrome related to RASA1 mosaic mutation.
Clinical geneticsParkes Weber syndrome associated with two somatic pathogenic variants in RASA1.
Cold Spring Harbor molecular case studiesEmbolization Techniques for Arteriovenous Malformations in Parkes-Weber Syndrome.
Annals of vascular surgeryMajor Limb Amputations in Patients with Congenital Vascular Malformations.
Annals of vascular surgeryShort- and mid-term effects of covered stent implantation on extremity findings and heart failure in Parkes Weber syndrome: a case report.
European heart journal. Case reportsA Giant Arteriovenous Malformation and Fistula in a Newborn with Parkes Weber Syndrome. Case Report.
Acta medica LituanicaWound-Healing Problems Associated with Combined Vascular Malformations in Klippel-Trenaunay Syndrome.
Advances in wound careEthanol combined with coil embolisation for the treatment of arteriovenous malformations in a patient with Parkes Weber syndrome.
Annals of the Royal College of Surgeons of EnglandThrombosis of a Long-Segment Aneurysm from the Iliac to Popliteal Artery Associated with Arteriovenous Malformation and Varicose Veins.
Vascular specialist internationalIdentification of hypertension, and renal imaging, in Parkes Weber syndrome.
QJM : monthly journal of the Association of PhysiciansCapillary malformations in a child with Kabuki syndrome: A case report.
JAAD case reportsParkes Weber syndrome presenting as Stewart-Bluefarb acroangiodermatitis.
BMJ case reportsCongenital Limb Overgrowth Syndromes Associated with Vascular Anomalies.
Radiographics : a review publication of the Radiological Society of North America, IncHormonal receptors in cutaneous vascular malformations: 51 cases.
Virchows Archiv : an international journal of pathologyHand Ischemia due to Steal Syndrome Associated with Multiple Arteriovenous Malformations in a Patient with Parkes-Weber Syndrome.
The journal of hand surgery Asian-Pacific volumeAn unusual cause of postmenopausal vaginal haemorrhage: a case report.
BMC women's healthKlippel-Trenaunay and Parkes-Weber syndromes: two case reports.
Jornal vascular brasileiroExpanding the clinical and molecular findings in RASA1 capillary malformation-arteriovenous malformation.
European journal of human genetics : EJHGGiant popliteal vein aneurysm in Parkes-Weber syndrome.
SurgeryClinical and haemodynamic risk factors associated with discrepancies in lower limb length with capillary malformations: data from the national paediatric French cohort CONAPE.
The British journal of dermatologyClinical and sonographic features of pediatric soft-tissue vascular anomalies part 2: vascular malformations.
Pediatric radiologySpinal Arteriovenous Malformation Associated with Parkes Weber Syndrome: Report of Two Cases and Literature Review.
World neurosurgeryThe pathobiology of vascular malformations: insights from human and model organism genetics.
The Journal of pathologyPulmonary hypertension associated with Parkes-Weber syndrome (a rare congenital arteriovenous malformation).
Vascular medicine (London, England)A rare case of worsening of Parkes-Weber syndrome with development of POEMS syndrome.
British journal of haematologyGenetic basis for vascular anomalies.
Seminars in cutaneous medicine and surgeryNodular Proliferation in Parkes Weber Syndrome.
Annals of vascular surgeryParkes Weber syndrome-Diagnostic and management paradigms: A systematic review.
PhlebologyKlippel-Trénaunay Syndrome: Need for Careful Clinical Classification.
Journal of ultrasound in medicine : official journal of the American Institute of Ultrasound in MedicineChronic foot ulcer caused by Parkes Weber syndrome.
International wound journalCombined surgical and endovascular treatment of complex high-flow conus medullaris arteriovenous fistula associated with Parkes Weber syndrome: case report.
Journal of neurosurgery. SpineParkes Weber syndrome: a case of right lower limb hypertrophy.
ANZ journal of surgeryRat Model of Parkes Weber Syndrome.
PloS oneUnusual Case of Parkes Weber Syndrome with Aneurysm of the Left Common Iliac Vein and Thrombus in Inferior Vena Cava.
Annals of vascular surgeryParkes weber syndrome involving right lower limb: a case report.
The Indian journal of surgeryAssociações
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Comunidades
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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.
- Cerebrovascular Malformations Associated With Hereditary Hemorrhagic Telangiectasia and HHT-Like Syndromes: A Comparative Overview.
- High-Flow and Low-Flow Cerebrovascular Malformations Syndromes Associated With Klippel-Trénaunay and Parkes-Weber Syndromes. A Systematic Review.
- Parkes Weber syndrome, a rare case of pulmonary hypertension: a case report.
- Case Report: The Parkes-Weber syndrome in the patient who underwent coronary surgery.
- Analysis of the application value of endovascular interventional technology in the diagnosis and treatment of vascular malformations with limb hypertrophy.
- Ruptured Axillo Brachial Aneurysmosis and Vessel Tortuosity: A Neglected Parkes-Weber Syndrome.
- A leg ulcer revealing Parkes Weber syndrome in a child.
Bases de dados e fontes oficiais
Identificadores e referências canônicas usadas para montar este verbete.
- ORPHA:90307(Orphanet)
- OMIM 608354(OMIM)
- MONDO:0700325(MONDO)
- GARD:9787(GARD (NIH))
- Variantes catalogadas(ClinVar)
- Busca completa no PubMed(PubMed)
- Artigo Wikipedia(Wikipedia)
- Q7138441(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
