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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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What are the signs and symptoms of Gorham's disease?

Gorham's disease can involve men or women and any age group, although most cases are discovered before the age of 40. Normally bones replenish themselves. But in Gorham's disease, bone loss occurs and progresses in certain areas of the body but no new bone takes its place. This may occur in just one bone or may spread to other areas of the affected bone. Instead of the bone reforming, fibrous tissue may develop in areas of bone loss. Angiomas often occur in conjunction with bone loss, which causes swelling.  An angioma is abnormal growth of tissue formed by small blood or lymphatic vessels.[1] 

Symptoms associated with Gorham's disease vary and depend on the specific area of the body involved. This condition may affect any part of the skeleton; but most commonly involved sites are the skull, jaw, shoulder, rib cage, and pelvis. The degree of complications ranges from mild to severe or even life-threatening. In some cases, affected individuals may rapidly develop pain and swelling in the affected area or a fracture on the affected site.    Others may experience a dull pain or ache, limitation of motion, or generalized weakness that builds over time. Some people, however, never experience symptoms.[1]

When the lower jaw, upper jaw, tooth sockets, or other bones in the face, neck or head are affected, symptoms may include pain, loose teeth, fractures, facial deformity, and/or recurrent meningitis. [1]

Complications from Gorham's disease may occur when fluids build-up (pleural effusion) in the space between the membrane that surround each lung and line the chest cavity (chylothorax).[1] This can have serious consequences, including loss of protein, malnutrition, and respiratory distress and failure.[2]

The rate of progression is unpredictable and the prognosis can be difficult to determine. The disease can stabilize after a number of years, go into spontaneous remission, or be fatal. Recurrence can also occur. Involvement of the spine and skull base may cause a poor outcome from neurological complications. In most cases, bone resorption stops on its own after a variable number of years.[3]
Last updated: 10/6/2011

  1. Gorham's disease. National Organization for Rare Disorders (NORD). 2005; Accessed 10/6/2011.
  2. What is Gorham’s Disease?. Lymphangiomatosis & Gorham's Disease Alliance. Accessed 12/6/2011.
  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. Accessed 10/6/2011.