In 2014 the International Society for the Study of Vascular Anomalies (ISSVA) approved an updated and expanded classification for vascular anomalies. The names lymphangiomatosis and Gorham’s were also classified by the ISSVA.
Gorham-Stout disease (GSD) is the new, classified name.
For Gorham’s disease, Gorham-Stout syndrome, Gorham’s syndrome, Gorham’s lymphangiomatosis, Morbus-Gorham-Stout disease, disappearing bone disease, vanishing bone disease, phantom bone disease, massive osteolysis, disseminated osseous bone disease, idiopathic massive osteolysis, essential osteolysis and acro-osteolysis syndrome, skeletal lymphangiomatosis, skeletal hemangiomatosis, disseminated lymphangiomatosis, thoracic lymphangiomatosis, etc.
The different names are still being used in daily life.
ISSVA organizes biennial workshops to promote clinical and scientific research that will lead to advances in knowledge on all aspects of vascular anomalies.
This rare and potentially catastrophic disease remains understudied, is poorly understood, and frequently misdiagnosed. It doesn’t even have a consistent name. With the extraordinary help of our research partner, the Lymphatic Malformation Institute, the LGDA is working to change that and answer this basic question: Is the Gorham’s disease a form of lymphangiomatosis or are these two separate and distinct conditions?