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Boston Children’s Hospital is a world leader in diagnosing and treating Gorham-Stout disease, a very rare bone disorder involving the vascular channels next to and within the bone.
There have been fewer than 300 cases ever reported in medical literature, and our expert team has treated or consulted on more than 50 of them.
Patients with Gorham-Stout disease experience gradual bone loss (osteolysis) caused by an abnormal overgrowth of lymphatic vessels. These vessels are a normal part of the body’s lymphatic system, which transports a clear fluid containing white blood cells called lymph around the body to help clear toxins and waste.
In patients with Gorham-Stout, these thin-walled lymphatic vessels expand (dilate) and multiply, leading to the rapid breakdown of bone (bone resorption).
In children and young adults, bone resorption is a normal process of bone growth, in which new bone replaces old. For those with Gorham-Stout, the overgrown lymphatic vessels may change the balance of bone formation and loss, leading to the loss of bone and the presence of lymphatic vessels where bone used to be.
Gorham-Stout disease is sometimes called vanishing bone disease. Other names include:
At Boston Children’s, we treat patients with Gorham-Stout disease in our Vascular Anomalies Center, considered a premier center in the world for vascular anomalies.
Families of children around the globe with Gorham-Stout seek care at Boston Children’s because we offer:
In addition to our efforts around Gorham-Stout disease, we also work with other organizations, such as the Lymphangiomatosis and Gorham Disease Alliance (LGDA), whose mission it is to improve the care of patients with Gorham-Stout disease by promoting research and providing support, education, advocacy and community to patients and their families.
Reviewed by Cameron Trenor, MD, © Boston Children’s Hospital
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”