Synonyms

• Disappearing Bone Disease
• Gorham's Syndrome
• Gorham-Stout Syndrome
• Idiopathic Massive Osteolysis
• Massive Gorham Osteolysis
• Massive Osteolysis
• Morbus Gorham-Stout Disease
• Progressive Massive Osteolysis
• Vanishing Bone Disease
• Essential Osteolysis

Disorder Subdivisions

• None

General Discussion

Gorham's disease (GD) is an extremely rare bone disorder; fewer than 200 cases are reported in the medical literature. It 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.

Although the disease may strike any of the bones of the body, it is more often recognized earlier when the bones at the top of the head (calvarium) and/or the mandibles are involved.

Because of its rarity, the disorder often goes unrecognized. As a result of that, coupled with a lack of agreement on how best to treat Gorham’s disease once it is recognized, treatment may often be delayed. The cause of Gorham’s disease is unknown.

Resources

NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
USA
Tel: 3014954484
Fax: 3017186366
Tel: 8772264267
TDD: 3015652966
Email: NIAMSinfo@mail.nih.gov
Internet: http://www.niams.nih.gov/Health_Info

Lymphangiomatosis & Gorham's Disease Alliance
19919 Villa Lante Place
Boca Raton, FL 33434
Tel: (561)441-9766
Email: info@lgdalliance.org
Internet: http://www.lgdalliance.org/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  4/25/2008
Copyright  1991, 2002, 2005National Organization for Rare Disorders, Inc.