Caring for someone with this diagnosis? Eleplan keeps diagnoses, medications, documents and every specialist in one plan.
Start free with EleplanGorham-Stout disease
ORPHA:73Malformation syndrome
Also called Gorham disease · Gorham syndrome · Idiopathic massive osteolysis · Progressive massive osteolysis · Vanishing bone disease
What it is
Gorham-Stout disease (GSD) is a rare disease of massive osteolysis associated with proliferation and dilation of lymphatic vessels. GSD may affect any bone in the body and can be monostotic or polyostotic. Symptoms at presentation are dependent upon the location(s) of the disease; the most common symptom is localized pain. The disease may be discovered after a pathological fracture.
Key facts
- Prevalence
- <1 / 1 000 000
- Age of onset
- All ages
- Inheritance
- Not applicable
- Classified as
- Malformation syndrome
Prevalence figures describe populations, not individuals, and are often estimates from a single study. Where the figure is an incidence or a birth prevalence, it says so.
Signs and symptoms
Very common80–99%
3Common30–79%
19- Abnormal bone ossification
- Abnormality of facial skeleton
- Abnormality of the calvaria
- Abnormality of the cervical spine
- Abnormality of the internal auditory canal
- Abnormality of the occipital bone
- Abnormality of the temporomandibular joint
- Bone pain
- Cortical irregularity
- Edema
- Functional motor deficit
- Impaired mastication
- Lymphangioma
- Mandibular pain
- Osteolysis involving bones of the lower limbs
- Osteolysis involving bones of the upper limbs
- Osteopenia
- Rhinorrhea
- Torticollis
These ranges are how often a sign appears across everyone diagnosed, not a prediction for one person — most people have some of these and not others. Orphanet also records findings that are specifically absent in this disease; those are in the data but not listed here.
ICD-10 codes
ICD-10 has no distinct code for most rare diseases, so many are filed under the nearest available one. A shared code identifies the group, not this disease — the ORPHAcode above is what identifies it.
Related health topics
Reached through the ICD-10 categories this disease is filed under, so these describe the broader group rather than this disease specifically.
Cross-references
Orphadata Science: Free access data from Orphanet. © INSERM 1999. Data version 2026-06-23. Available under CC BY 4.0. This is a reference, not medical advice.
Powered by Eleplan
A rare diagnosis is just the start. Eleplan keeps the whole care plan in one place.
Diagnoses, medications, documents, appointments, and the whole care team — organized and always in sync, so you are not retelling the same story to every new specialist. With Ellie, your AI care assistant, on top of it. Free to start.