U.S. flag

An official website of the United States government

Format

Send to:

Choose Destination

Gorham-Stout disease(GSD)

MedGen UID:
45248
•Concept ID:
C0029438
•
Disease or Syndrome
Synonyms: Cystic angiomatosis of bone diffuse; Gorham disease; Gorham's disease; Gorham-Stout syndrome; Osteolysis, Massive; Vanishing bone disease
SNOMED CT: Gorham disease (1515008); Gorham's disease (1515008); Massive osteolysis (1515008); Phantom bone disease (1515008); Hemangiomata with osteolysis (1515008); Osteolysis and angiomatous nevi (1515008)
Modes of inheritance:
Not genetically inherited
MedGen UID:
988794
•Concept ID:
CN307044
•
Finding
Source: Orphanet
clinical entity without genetic inheritance.
See: This record
Not genetically inherited (Orphanet)
 
Monarch Initiative: MONDO:0007414
OMIM®: 123880
Orphanet: ORPHA73

Definition

Gorham-Stout disease (GSD) is a rare disease of massive osteolysis associated with proliferation and dilation of lymphatic vessels. GSD may affect any bone in the body and can be monostotic or polyostotic. Symptoms at presentation are dependent upon the location(s) of the disease; the most common symptom is localized pain. The disease may be discovered after a pathological fracture. [from ORDO]

Clinical features

From HPO
Cystic angiomatosis of bone
MedGen UID:
867384
•Concept ID:
C4021749
•
Finding
Disseminated multifocal hemangiomatous or lymphangiomatous lesions of the skeleton. The lesions are lytic, well-defined, round or oval lesions within the medullary cavity, and they have an intact cortex, and manifest variable peripheral sclerosis and may exhibit endosteal scalloping.
See: Feature record | Search on this feature
Abnormality of the skeletal system
MedGen UID:
867418
•Concept ID:
C4021790
•
Anatomical Abnormality
An abnormality of the skeletal system.
See: Feature record | Search on this feature

Term Hierarchy

CClinical test,  RResearch test,  OOMIM,  GGeneReviews,  VClinVar  
  • CROGVGorham-Stout disease
Follow this link to review classifications for Gorham-Stout disease in Orphanet.

Professional guidelines

PubMed

Clinical features and current management experience in Gorham-Stout disease: a systematic review.
Zhou Z, Qiu T, Zhou J, Zhang Z, Gong X, Zhang X, Lan Y, Yang C, Zhang Y, Xiang S, Ji Y
Orphanet J Rare Dis 2025 Mar 19;20(1):134. doi: 10.1186/s13023-025-03649-9. PMID: 40102890Free PMC Article
Updates to the Management of Gorham-Stout Disease and Osseous Vascular Lesions in the Head and Neck.
Burke AB, Dong C, Chandra SR
Oral Maxillofac Surg Clin North Am 2024 Feb;36(1):93-102. Epub 2023 Oct 29 doi: 10.1016/j.coms.2023.09.004. PMID: 37903662
How we approach the diagnosis and management of complex lymphatic anomalies.
Ricci KW, Iacobas I
Pediatr Blood Cancer 2022 Aug;69 Suppl 3:e28985. Epub 2021 Apr 12 doi: 10.1002/pbc.28985. PMID: 33844431

Recent clinical studies

Etiology

Clinical features and current management experience in Gorham-Stout disease: a systematic review.
Zhou Z, Qiu T, Zhou J, Zhang Z, Gong X, Zhang X, Lan Y, Yang C, Zhang Y, Xiang S, Ji Y
Orphanet J Rare Dis 2025 Mar 19;20(1):134. doi: 10.1186/s13023-025-03649-9. PMID: 40102890Free PMC Article
Management of Gorham Stout disease with skull-base defects: Case series of six children and literature review.
Simon F, Luscan R, Khonsari RH, Toubiana J, Belhous K, James S, Blauwblomme T, Zerah M, Denoyelle F, Donadieu J, Couloigner V
Int J Pediatr Otorhinolaryngol 2019 Sep;124:152-156. Epub 2019 Jun 5 doi: 10.1016/j.ijporl.2019.06.002. PMID: 31195309
Use of zoledronic acid combined with thalidomide in the treatment of Gorham-Stout disease.
Mao T, Xu L, Yu Y, Li Z, Sheng J
Rheumatology (Oxford) 2018 Jun 1;57(6):1122-1124. doi: 10.1093/rheumatology/key055. PMID: 29554344
Nonmalignant Adult Thoracic Lymphatic Disorders.
Itkin M, McCormack FX
Clin Chest Med 2016 Sep;37(3):409-20. doi: 10.1016/j.ccm.2016.04.004. PMID: 27514588
Gorham-Stout disease of the pelvis: Seven years follow up with complete radiological evaluation.
Tolis K, Triantafyllopoulos IK, Tournis S, Papaioannou NA
J Musculoskelet Neuronal Interact 2016 Mar;16(1):79-82. PMID: 26944827Free PMC Article

Diagnosis

Updates to the Management of Gorham-Stout Disease and Osseous Vascular Lesions in the Head and Neck.
Burke AB, Dong C, Chandra SR
Oral Maxillofac Surg Clin North Am 2024 Feb;36(1):93-102. Epub 2023 Oct 29 doi: 10.1016/j.coms.2023.09.004. PMID: 37903662
A Girl with Gorham-Stout Disease.
Wang Z, Li K
J Pediatr 2018 Dec;203:456. Epub 2018 Aug 31 doi: 10.1016/j.jpeds.2018.07.076. PMID: 30177349
Use of zoledronic acid combined with thalidomide in the treatment of Gorham-Stout disease.
Mao T, Xu L, Yu Y, Li Z, Sheng J
Rheumatology (Oxford) 2018 Jun 1;57(6):1122-1124. doi: 10.1093/rheumatology/key055. PMID: 29554344
Nonmalignant Adult Thoracic Lymphatic Disorders.
Itkin M, McCormack FX
Clin Chest Med 2016 Sep;37(3):409-20. doi: 10.1016/j.ccm.2016.04.004. PMID: 27514588
Gorham-stout disease mimicking spondyloarthritis.
Koo HS, Park SY, Kim GY, Song R
J Rheumatol 2014 Jul;41(7):1430-2. doi: 10.3899/jrheum.131439. PMID: 24986965

Therapy

Difficult Therapeutic Decisions in Gorham-Stout Disease-Case Report and Review of the Literature.
Wojciechowska-Durczynska K, Zygmunt A, Mikulak M, Ludwisiak M, Lewinski A
Int J Environ Res Public Health 2022 Sep 16;19(18) doi: 10.3390/ijerph191811692. PMID: 36141975Free PMC Article
A Girl with Gorham-Stout Disease.
Wang Z, Li K
J Pediatr 2018 Dec;203:456. Epub 2018 Aug 31 doi: 10.1016/j.jpeds.2018.07.076. PMID: 30177349
Chylothorax From Gorham-Stout Disease.
Kotaru AC, Rajput AK
J Bronchology Interv Pulmonol 2018 Oct;25(4):340-342. doi: 10.1097/LBR.0000000000000506. PMID: 29771777
Use of zoledronic acid combined with thalidomide in the treatment of Gorham-Stout disease.
Mao T, Xu L, Yu Y, Li Z, Sheng J
Rheumatology (Oxford) 2018 Jun 1;57(6):1122-1124. doi: 10.1093/rheumatology/key055. PMID: 29554344
Gorham-Stout disease.
Mavrogenis AF, Zambirinis CP, Dimitriadis PA, Tsakanikas A, Papagelopoulos PJ
J Surg Orthop Adv 2010 Summer;19(2):85-90. PMID: 20727303

Prognosis

Updates to the Management of Gorham-Stout Disease and Osseous Vascular Lesions in the Head and Neck.
Burke AB, Dong C, Chandra SR
Oral Maxillofac Surg Clin North Am 2024 Feb;36(1):93-102. Epub 2023 Oct 29 doi: 10.1016/j.coms.2023.09.004. PMID: 37903662
Gorham-Stout disease of skull base leading to cranial settling and rhinorrhea: a case-based review.
Maroufi SF, Habibi Z, Dabbagh Ohadi MA, Mohammadi E, Nejat F
Childs Nerv Syst 2022 Apr;38(4):695-703. Epub 2022 Feb 25 doi: 10.1007/s00381-021-05394-3. PMID: 35217940
Gorham-Stout disease with involvement of the jaws: a systematic review.
Chrcanovic BR, Gomez RS
Int J Oral Maxillofac Surg 2019 Aug;48(8):1015-1021. Epub 2019 Mar 18 doi: 10.1016/j.ijom.2019.03.002. PMID: 30898430
Use of zoledronic acid combined with thalidomide in the treatment of Gorham-Stout disease.
Mao T, Xu L, Yu Y, Li Z, Sheng J
Rheumatology (Oxford) 2018 Jun 1;57(6):1122-1124. doi: 10.1093/rheumatology/key055. PMID: 29554344
Complex lymphatic anomalies.
Trenor CC 3rd, Chaudry G
Semin Pediatr Surg 2014 Aug;23(4):186-90. Epub 2014 Jul 22 doi: 10.1053/j.sempedsurg.2014.07.006. PMID: 25241096

Clinical prediction guides

Clinical features and current management experience in Gorham-Stout disease: a systematic review.
Zhou Z, Qiu T, Zhou J, Zhang Z, Gong X, Zhang X, Lan Y, Yang C, Zhang Y, Xiang S, Ji Y
Orphanet J Rare Dis 2025 Mar 19;20(1):134. doi: 10.1186/s13023-025-03649-9. PMID: 40102890Free PMC Article
Surgical treatment of a patient with Gorham-Stout disease of craniovertebral junction: case report and literature review.
Evsyukov A, Kosimshoev M, Kubetskyi Y, Nikitenko E, Rzaev J
Br J Neurosurg 2024 Aug;38(4):972-977. Epub 2021 Sep 29 doi: 10.1080/02688697.2021.1981244. PMID: 34585642
Gorham-Stout disease of skull base leading to cranial settling and rhinorrhea: a case-based review.
Maroufi SF, Habibi Z, Dabbagh Ohadi MA, Mohammadi E, Nejat F
Childs Nerv Syst 2022 Apr;38(4):695-703. Epub 2022 Feb 25 doi: 10.1007/s00381-021-05394-3. PMID: 35217940
Gorham-Stout disease with involvement of the jaws: a systematic review.
Chrcanovic BR, Gomez RS
Int J Oral Maxillofac Surg 2019 Aug;48(8):1015-1021. Epub 2019 Mar 18 doi: 10.1016/j.ijom.2019.03.002. PMID: 30898430
Complex lymphatic anomalies.
Trenor CC 3rd, Chaudry G
Semin Pediatr Surg 2014 Aug;23(4):186-90. Epub 2014 Jul 22 doi: 10.1053/j.sempedsurg.2014.07.006. PMID: 25241096

Recent systematic reviews

Clinical features and current management experience in Gorham-Stout disease: a systematic review.
Zhou Z, Qiu T, Zhou J, Zhang Z, Gong X, Zhang X, Lan Y, Yang C, Zhang Y, Xiang S, Ji Y
Orphanet J Rare Dis 2025 Mar 19;20(1):134. doi: 10.1186/s13023-025-03649-9. PMID: 40102890Free PMC Article
Gorham-Stout disease with involvement of the jaws: a systematic review.
Chrcanovic BR, Gomez RS
Int J Oral Maxillofac Surg 2019 Aug;48(8):1015-1021. Epub 2019 Mar 18 doi: 10.1016/j.ijom.2019.03.002. PMID: 30898430
Molecular, phenotypic aspects and therapeutic horizons of rare genetic bone disorders.
Faruqi T, Dhawan N, Bahl J, Gupta V, Vohra S, Tu K, Abdelmagid SM
Biomed Res Int 2014;2014:670842. Epub 2014 Oct 22 doi: 10.1155/2014/670842. PMID: 25530967Free PMC Article

Supplemental Content

Table of contents

    Clinical resources

    Practice guidelines

    • PubMed
      See practice and clinical guidelines in PubMed. The search results may include broader topics and may not capture all published guidelines. See the FAQ for details.
    • Bookshelf
      See practice and clinical guidelines in NCBI Bookshelf. The search results may include broader topics and may not capture all published guidelines. See the FAQ for details.

    Reviews

    Related information

    • ClinVar
      Related medical variations
    • MeSH
      Related Medical Subject Headings
    • OMIM
      Related records in OMIM
    • PMC Articles
      Related information in PubMed Central Links
    • PubMed
      Related literature resources in PubMed
    • PubMed (OMIM)
      Related literature resources in PubMed

    Recent activity

    Clear Turn Off Turn On

    Your browsing activity is empty.

    Activity recording is turned off.

    Turn recording back on

    See more...