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There are many ways you can help children and their families get the care they need.
There is no one test that can positively diagnose Gorham-Stout disease. Your physician will conduct a thorough medical exam and ask questions about your child to create a detailed medical history.
Additional tests your physician may recommend include one or more of the following:
MRI or CT scans of a patient with Gorham-Stout will show bone that has disappeared, appears to have holes in it or looks hollow.
Because Gorham-Stout disease is so rare with few telltale symptoms, it is commonly misdiagnosed or missed altogether. If the disease progresses far without treatment, it can severely affect surrounding tissues and systems, leading to neurological impairment, bone deformity and infection.
At Boston Children’s, our team has treated and consulted on more than 50 patients with Gorham-Stout disease. That experience means our team can often recognize the signs of Gorham-Stout on imaging tests, even in complex cases. And because experts from up to 17 medical specialties are involved in our Vascular Anomalies Center, you can be confident your child will have access to the right specialist to treat all of his symptoms.
We also offer:
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.”