Gorham's Disease

Common Name(s)

Gorham's Disease, Vanishing Bone Disease

Gorham's disease is a rare bone disorder that is characterized by bone loss (osteolysis), often associated with swelling or abnormal blood vessel growth (angiomatous proliferation). Bone loss can occur in just one bone, or spread to soft tissue and adjacent bones.  It may affect any part of the skeleton, but most commonly involves the skull, shoulder, and pelvis. The cause of Gorham's disease is currently unknown.  Most cases occur randomly. Treatment is based on the signs and symptoms present in each affected person, and most commonly involves surgery and/or radiation therapy. In some cases, Gorham's disease improves without treatment (spontaneous remission).
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Gorham's Disease" for support, advocacy or research.

Lymphangiomatosis & Gorham's Disease Alliance

Our mission is to improve the care of patients through our patient support programs, and by raising funds to support research that will identify effective treatments and cures. We strive to educate patients and families, and the medical and scientific communities, by providing important, relevant information, and by being the leading advocate for the worldwide member-community.

Last Updated: 5 Nov 2012

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General Support Organizations

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Gorham's Disease" for support, advocacy or research.

Lymphangiomatosis & Gorham's Disease Alliance

Our mission is to improve the care of patients through our patient support programs, and by raising funds to support research that will identify effective treatments and cures. We strive to educate patients and families, and the medical and scientific communities, by providing important, relevant information, and by being the leading advocate for the worldwide member-community.

http://www.lgdalliance.org/

Last Updated: 5 Nov 2012

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General Support Organizations

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General Resources

Lymphatic Malformation Research

The LGDA is closely affiliated with the Lymphatic Malformation Institute (LMI). The LMI receives requests for research projects into lymphatic diseases including lymphangiomatosis and Gorham's disease.

Updated 3 Nov 2012

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Gorham's Disease" returned 11 free, full-text research articles on human participants. First 3 results:

Gorham's disease of mandible--a rare case presentation in pediatric patient.
 

Author(s): Santanu Mukhopadhyay, Abira Chattopadhyay, Raja Bhattacharya, Ushapati Roy

Journal: J Indian Soc Pedod Prev Dent. ;34(2):180-4.

 

Gorham's disease or vanishing bone disease is a rare, progressive musculoskeletal disorder characterized by resorption of bone matrix, and later replaced by fibrous connective tissue. The disease has no specific predilection for age, gender, or race. The most common sites of involvement ...

Last Updated: 15 Apr 2016

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Gorham's disease: 99mTc HMDP bone scan findings.
 

Author(s): L López Vélez, P Navarro, L Rodríguez Chacón, P Sanz Moncasi, P Liévano, L De La Cueva

Journal: Rev Esp Med Nucl Imagen Mol. 2012 Sep;31(5):292-4.

 

Last Updated: 16 Oct 2012

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Vanishing bone disease (Gorham's disease) - a rare occurrence of unknown etiology.
 

Author(s): Sumit Ray, Subhalakshmi Mukhopadhyay, Ranjana Bandyopadhyay, Swapan K Sinha

Journal: Indian J Pathol Microbiol. ;55(3):399-401.

 

A 20-year-old male patient presented with painful swelling around left elbow joint. Radiographic examination revealed osteolytic lesion with pathological fracture of lower end of humerus and upper radius. Upper end of ulna was completely absent along with bony erosion. Histopathology ...

Last Updated: 3 Oct 2012

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Gorham's Disease" returned 7 free, full-text review articles on human participants. First 3 results:

Complex single step skull reconstruction in Gorham's disease - a technical report and review of the literature.
 

Author(s): Victoria Ohla, Ahmed B Bayoumi, Markus Hefty, Matthew Anderson, Ekkehard M Kasper

Journal:

 

Gorham's disease is a rare osteolytic disorder characterized by progressive resorption of bone and replacement of osseous matrix by a proliferative non-neoplastic vascular or lymphatic tissue. A standardized treatment protocol has not yet been defined due to the unpredictable natural ...

Last Updated: 17 Apr 2015

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Temporary paraplegia resulting from Gorham's disease involving the third lumbar vertebra and proximal femur: a five-year follow-up and review of the literature.
 

Author(s): Ali Akbar Esmailiejah, Naser Kamalian, Mohammadreza Abbasian

Journal: Arch Iran Med. 2013 Nov;16(11):686-90.

 

Gorham's disease is a rare musculoskeletal disease of unknown etiology characterized by progressive osteolysis and massive bone destruction. Here, we report an extremely rare case of Gorham's disease involving two far sites in the lumbar spine and trochanteric region, gradually resulting ...

Last Updated: 11 Nov 2013

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[Gorham's disease and intra-osseous vascular abnormalities].
 

Author(s): Sébastien Héritier, Jean Donadieu

Journal: Bull Cancer. 2012 May;99(5):599-604.

 

Gorham's disease is a rare condition of unknown etiology, which is characterized by intra-osseous vascular abnormalities leading to osteolysis and sometimes, extension to adjacent tissues. Although there is no histological evidence of malignancy, the lesions display an aggressive ...

Last Updated: 15 May 2012

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Identification of Biomarkers for Patients With Vascular Anomalies
 

Status: Recruiting

Condition Summary: Vascular Anomaly; Generalized Lymphatic Anomaly; Kaposiform Hemangioendothelioma; Kaposiform Lymphangiomatosis; Gorham-Stout Disease

 

Last Updated: 26 Apr 2017

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Lymphatic Anomalies Registry
 

Status: Recruiting

Condition Summary: Lymphatic Malformation; Generalized Lymphatic Anomaly (GLA); Central Conducting Lymphatic Anomaly; CLOVES Syndrome; Gorham-Stout Disease ("Disappearing Bone Disease"); Blue Rubber Bleb Nevus Syndrome; Kaposiform Lymphangiomatosis; Kaposiform Hemangioendothelioma/Tufted Angioma; Klippel-Trenaunay Syndrome; Lymphangiomatosis

 

Last Updated: 26 Jul 2016

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