Living with Gorham-Stout disease
A rare bone disorder in which bone is lost, often with abnormal blood vessel growth.
Understanding Gorham-Stout disease
Bone loss can happen in one bone or spread to soft tissue and nearby bones. It may affect any part of the skeleton, but most often the skull, collarbone, pelvis, ribs, spine, and jaw. Complications depend on which bones are affected. It can occur at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bone pain
- Bone loss (osteolysis)
- Swelling
- Increased risk of fracture
- Chewing difficulties
- Differences in the skull and facial bones
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists, bone and joint specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Lymphangiomatosis & Gorham's Disease Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- Expert care
- Expert lists: Lymphangiomatosis & Gorham's Disease Alliance
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Lymphangiomatosis & Gorham's Disease Alliance
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the cause is currently unknown. Most cases occur sporadically (by chance).
Also known as: gorham disease; gorham syndrome; gorham's disease; hemangiomata with osteolysis; idiopathic massive osteolysis; massive osteolysis
Patient organizations
- Lymphangiomatosis & Gorham's Disease AllianceGorham-Stout disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Gorham-Stout disease.
Explore research for Gorham-Stout disease
Explore actively recruiting Gorham-Stout disease studies with HealthSpark.
Find actively recruiting studies for Gorham-Stout disease with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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