Gorham-Stout disease with thoracic involvement: pathogenic mechanisms, respiratory complications, and multimodal therapies

Gorham-Stout disease (GSD), also known as vanishing bone disease, is a rare osteolytic disorder characterized by progressive bone resorption and proliferation of lymphatic and vascular channels. Thoracic involvement often leads to life-threatening respiratory complications, yet clinical recognition remains delayed due to its rarity and heterogeneity. This review aims to synthesize recent advances in the understanding of GSD pathogenesis, highlight the disproportionate burden of respiratory complications-particularly chylothorax-and propose an integrated diagnostic and therapeutic framework tailored to anatomical risk profiles. A comprehensive literature review of 125 cases (2010-2025) was conducted, focusing on molecular mechanisms, clinical phenotypes, respiratory manifestations, and therapeutic outcomes. Key pathogenic pathways involving RANKL/RANK/OPG, M-CSF, VEGF, IL-6, and TNF-α were analyzed, alongside their immune-vascular interactions. Respiratory involvement was observed in over 40% of cases, with chylothorax accounting for the highest mortality risk. Aberrant lymphangiogenesis, immune dysregulation, and osteoclast hyperactivation formed the mechanistic triad driving disease progression. Imaging (CT/MRI/PET) and exclusion-based diagnostics remain essential. Sirolimus-based regimens, bisphosphonates, radiotherapy, and surgical interventions-particularly thoracic duct ligation and vertebral stabilization-comprise the current multimodal strategy. GSD represents a clinically and mechanistically complex entity requiring early identification of respiratory threats, individualized treatment plans, and multidisciplinary coordination. Future research should prioritize biomarker discovery and prospective therapeutic trials to optimize outcomes in this rare but severe condition.

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Publication Details

Journal
Orphanet Journal of Rare Diseases
Published
2026-01-30
DOI
https://doi.org/10.1186/s13023-026-04220-w
Primary Topic
Vascular Malformations and Hemangiomas
Type
article
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article

Gorham-Stout disease with thoracic involvement: pathogenic mechanisms, respiratory complications, and multimodal therapies

Yuan Zeng, Jinli Wang, Xiang Le, Naijian Li et al.
Orphanet Journal of Rare Diseases
Vascular Malformations and Hemangiomas
article

Gorham-Stout disease with thoracic involvement: pathogenic mechanisms, respiratory complications, and multimodal therapies

Yuan Zeng, Jinli Wang, Xiang Le, Naijian Li, Tanpeng Chen, Dawei Xu
article en

Abstract

Gorham-Stout disease (GSD), also known as vanishing bone disease, is a rare osteolytic disorder characterized by progressive bone resorption and proliferation of lymphatic and vascular channels. Thoracic involvement often leads to life-threatening respiratory complications, yet clinical recognition remains delayed due to its rarity and heterogeneity. This review aims to synthesize recent advances in the understanding of GSD pathogenesis, highlight the disproportionate burden of respiratory complications-particularly chylothorax-and propose an integrated diagnostic and therapeutic framework tailored to anatomical risk profiles. A comprehensive literature review of 125 cases (2010-2025) was conducted, focusing on molecular mechanisms, clinical phenotypes, respiratory manifestations, and therapeutic outcomes. Key pathogenic pathways involving RANKL/RANK/OPG, M-CSF, VEGF, IL-6, and TNF-α were analyzed, alongside their immune-vascular interactions. Respiratory involvement was observed in over 40% of cases, with chylothorax accounting for the highest mortality risk. Aberrant lymphangiogenesis, immune dysregulation, and osteoclast hyperactivation formed the mechanistic triad driving disease progression. Imaging (CT/MRI/PET) and exclusion-based diagnostics remain essential. Sirolimus-based regimens, bisphosphonates, radiotherapy, and surgical interventions-particularly thoracic duct ligation and vertebral stabilization-comprise the current multimodal strategy. GSD represents a clinically and mechanistically complex entity requiring early identification of respiratory threats, individualized treatment plans, and multidisciplinary coordination. Future research should prioritize biomarker discovery and prospective therapeutic trials to optimize outcomes in this rare but severe condition.

Orphanet Journal of Rare DiseasesVol. 21(1)
Shenzhen Sixth People's Hospital (CN), First Affiliated Hospital of Guangzhou Medical University (CN), Guangzhou Medical University (CN)
Good health and well-being
Openalex Percentile: Top 71%
Vascular Malformations and Hemangiomas
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