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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Gorham's disease


Other Names for this Disease

  • Cystic angiomatosis of bone diffuse
  • Gorham-Stout disease
  • Gorham-Stout syndrome
  • Osteolysis massive
  • Vanishing bone disease
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Treatment

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How might Gorham disease be treated?

No specific therapy exists for individuals with Gorham's disease. Different treatments may be effective in some, but not others. Several different methods are often used before finding one that is effective. In some cases, treatment may not be necessary at all.[1]

Most people, however, require intense treatment, especially if the disease has spread to other areas of the body or if there is extensive involvement in the spine and skull.[1] Treatment options include radiation therapy, steroids, and/or surgery that may involve bone grafting. Other treatments might include biphosphonates (such as pamidronate or zoledronic acid) and alpha-2b interferon. These treatments have led to improvement of symptoms such as pain in some cases. More research is necessary, however, to determine the long-term safety and effectiveness of these therapies in individuals with Gorham's disease.[2][3] 

All treatments (pharmacological and surgical) are all still considered to be experimental since there have been no studies done to examine the effectiveness of anything used to date. In general, no single treatment has been reported to be proven effective for arresting this disease and there are no known treatments that prevent or control the disease itself.[1]
Last updated: 2/21/2014

References
  1. What is Gorham’s Disease?. Lymphangiomatosis & Gorham's Disease Alliance. http://www.lgdalliance.org/patient-professional-resources/what-is-gorhams-disease/. Accessed 12/6/2011.
  2. Gorham's disease. National Organization for Rare Disorders (NORD). 2005; http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/832/viewAbstract. Accessed 10/6/2011.
  3. Gondivkar SM, Gadbail AR. Gorham-Stout syndrome: a rare clinical entity and review of literature. Oral Surg Oral Med Oral Pathol Oral Radiol Endod. 2010; 109(2):e41-48. http://www.ncbi.nlm.nih.gov/pubmed/19969488. Accessed 10/6/2011.


Other Names for this Disease
  • Cystic angiomatosis of bone diffuse
  • Gorham-Stout disease
  • Gorham-Stout syndrome
  • Osteolysis massive
  • Vanishing bone disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.