Gorham-Stout Disease in Children

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Contact the Vascular Anomalies Center

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.

What is Gorham-Stout disease?

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:

  • Gorham’s disease
  • Gorham’s syndrome
  • Gorham-Stout syndrome
  • GSD
  • Idiopathic or progressive massive osteolysis

Why Choose Boston Children’s for Gorham-Stout Treatment?

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:

  • Unmatched expertise: With fewer than 300 known cases of Gorham-Stout ever, the majority of physicians will never encounter this rare bone disorder. Our expert team has treated or consulted on more than 50 patients from all over the world, giving us extensive experience diagnosing and treating Gorham-Stout at different ages.
  • Advanced treatment options: While there is no cure for Gorham-Stout, our groundbreaking research with investigational drug therapies has reversed or lessened some of the effects of the disease in many cases. Learn more about Gorham-Stout treatment at Boston Children’s.
  • Comprehensive multidisciplinary team approach: Our Vascular Anomalies Center holds a weekly clinic that allows you and your child to meet with multiple specialists in one visit. Because Gorham-Stout affects surrounding tissues in addition to bone, we often need to treat the disorder as well as related complications. At the clinic, patients benefit from the expertise of a comprehensive, multidisciplinary team working together to develop an effective, coordinated treatment plan customized for your child. Read more about our VAC clinic.
  • Expert consults for national and international patients: Patients unable to travel to Boston may submit their case to our weekly VAC conference, where a team of experts will review your child’s history and advise on the best course of treatment. Learn more about our VAC conference.

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

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- Sandra L. Fenwick, President and CEO

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