Learn About Gorham's Disease

What is the definition of Gorham's Disease?
Gorham's disease is a rare bone disorder characterized by bone loss (osteolysis), often associated abnormal blood vessel growth (angiomatous proliferation). Bone loss can occur in just one bone, or spread to soft tissue and adjacent bones. Symtoms may include pain, swelling, and increased risk of fracture. It may affect any part of the skeleton, but most commonly involves the skull, collarbone (clavicle), pelvis, ribs, spine, and/or jaw. Depending on the bones affected, various complications may occur. The cause of Gorham's disease is currently unknown. Most cases occur sporadically. Treatment is based on the signs and symptoms in each affected person, and most commonly involves surgery and/or radiation therapy. In some cases, Gorham's disease improves without treatment (spontaneous remission).
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What are the alternative names for Gorham's Disease?
  • Cystic angiomatosis of bone diffuse
  • Gorham-Stout syndrome
  • Gorham-Stout disease
  • Osteolysis massive
  • Vanishing bone disease
What are the symptoms of Gorham's Disease?
Most cases of Gorham's disease are discovered before the age of 40. Symptoms vary among affected people and depend on the area(s) of the body involved. The 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 people 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 don't have any symptoms. Complications from Gorham's disease may occur when fluids build-up in the space between the membrane that surround each lung and line the chest cavity (pleural effusion). This can have serious consequences, including loss of protein, malnutrition, and respiratory distress and failure.
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What are the current treatments for Gorham's Disease?
There is no specific therapy for people with Gorham's disease. Certain 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. Most people 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. Treatment options may include vitamin D and calcitonin supplements, radiation therapy, and/or surgery that may involve bone grafting. Some of the best outcomes reported have involved radiation therapy alone or in combination with surgery. Other treatments might include biphosphonates (such as pamidronate or zoledronic acid) and alpha-2b interferon. These treatments have led to improvement of symptoms in some cases. More research is necessary to determine the long-term safety and effectiveness of these therapies in people with Gorham's disease. 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 proven effective in stopping the progression of the disease.
Who are the top Gorham's Disease Local Doctors?
GC
Dr. Gulraiz A. Chaudry
Radiology | Interventional Radiology | Pediatric Radiology
Elite
Highly rated in
9
conditions
Radiology
Interventional Radiology
Pediatric Radiology

Boston Childrens Hospital

Boston, MA 

Gulraiz Chaudry is a Radiologist and an Interventional Radiologist in Boston, Massachusetts. Dr. Chaudry has been practicing medicine for over 26 years and is rated as an Elite doctor by MediFind in the treatment of Gorham's Disease. He is also highly rated in 9 other conditions, according to our data. His top areas of expertise are Gorham's Disease, Lymphangiomatosis, Skeletal-Extraskeletal Angiomatosis, and Klippel-Trenaunay Syndrome. He is board certified in Diagnostic Radiology and Interventional Radiology and licensed to treat patients in Massachusetts. Dr. Chaudry is currently accepting new patients.

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MO
Michio Ozeki
Elite
Highly rated in
13
conditions

Gifu University

Gifu-shi, JP 

Michio Ozeki is in Gifu-shi, Japan. Ozeki is rated as an Elite expert by MediFind in the treatment of Gorham's Disease. He is also highly rated in 13 other conditions, according to our data. His top areas of expertise are Gorham's Disease, Skeletal-Extraskeletal Angiomatosis, Lymphangiomatosis, and Cavernous Lymphangioma.

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AN
Akifumi Nozawa
Distinguished
Highly rated in
3
conditions

Gifu University

Gifu-shi, JP 

Akifumi Nozawa is in Gifu-shi, Japan. Nozawa is rated as a Distinguished expert by MediFind in the treatment of Gorham's Disease. They are also highly rated in 3 other conditions, according to our data. Their top areas of expertise are Skeletal-Extraskeletal Angiomatosis, Gorham's Disease, Lymphangiomatosis, and Neuroblastoma.

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What is the outlook (prognosis) for Gorham's Disease?
The course of Gorham's disease varies among affected people. The rate of progression and long-term outlook (prognosis) can be hard to predict. The disease can stabilize after a number of years, go into spontaneous remission (improve without treatment), or be fatal. Recurrence can also occur. In most cases, bone resorption stops on its own after a variable number of years. When just the limbs or pelvis are affected, there generally is no threat to life. However, pulmonary involvement with chylothorax (a type of pleural effusion) or spinal involvement (causing neurological complications) may mean a poor prognosis, and can even lead to death.
What are the latest Gorham's Disease Clinical Trials?
Lymphatic Anomalies Registry for the Assessment of Outcome Data
Status: Recruiting
Start Date: June 2013
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Summary: Lymphatic anomalies are a rare subset of vascular anomalies that are poorly understood. the understanding of the natural history, long-term outcomes, risk factors for morbidity and mortality, and the relative benefit of medical therapies and procedures is limited.The goal of this project is to better understand these diseases and improve the care of theses rare patients. To do this, the investigat...
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Comparison of Vanguard XP and Vanguard CR Total Knee Arthroplasties. A Randomized Controlled Trial Evaluating Early Component Migration by RSA and Patient Reported Outcome.
Status: Active, not recruiting
Start Date: November 2013
Intervention Type: Device
Phase: Not Applicable
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Summary: In the history of TKA several different types of prosthetic designs have been evolved in order to optimize knee function after total knee replacement. The most common difference between the prosthetic designs revolves around issues concerning the preservation of the cruciate ligaments. The most popular prostheses have been the posterior stabilized prosthesis (PS) in which both cruciate ligaments a...
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What are the Latest Advances for Gorham's Disease?
Consolidation of Tumorous Mandibular Ramus Defect During Denosumab Treatment for Rapidly Progressive Metastatic Breast Cancer.
Condition: Tumorous Mandibular Ramus Defect in Patient with Metastatic Breast Cancer
Journal: Anticancer research
Treatment Used: Denosumab
Number of Patients: 1
Published: October 01, 2021
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Summary: This case report describes a female patient with metastatic breast cancer with metastasis to the jaw treated with denosumab.
Gorham-Stout Disease with Multiple Bone Involvement-Challenging Diagnosis of a Rare Disease and Literature Review.
Journal: Medicina (Kaunas, Lithuania)
Published: August 06, 2021
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Summary: Gorham-Stout Disease with Multiple Bone Involvement-Challenging Diagnosis of a Rare Disease and Literature Review.
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Gorham-Stout disease: interesting cause of pleural effusion.
Journal: BMJ case reports
Published: March 11, 2021
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Summary: Gorham-Stout disease: interesting cause of pleural effusion.
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