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The most common symptom of KHE is a growing lesion on the skin. This lesion:
Sometimes yes, but not in all cases. As the tumor gets bigger and more aggressive, a lesion can swell and may be very painful. This may also occur with infection, trauma to the lesion or after platelet transfusion.
Most patients have few complications and may not need medical therapy. Some patients with KHE, however, develop what is called Kasabach-Merritt phenomenon (KMP), in which their tumor traps platelets and keeps them from circulating through the bloodstream. Because platelets help prevent bleeding, patients with KMP have a higher risk of bleeding.
KMP may develop in patients whose tumors are larger, invade into deeper tissues or if there are sites of infection or inflammation nearby. Some patients who develop KMP also lack other blood proteins that help control bleeding, such as fibrinogen.
Not always, although nearly 75 percent of cases referred to the Vascular Anomalies Center at Boston Children’s have or develop KMP. However, as the VAC tends to see more severe cases, the percentage of KHE patients with KMP seen at the VAC may be greater than that among all KHE patients.
In very rare situations, KHE involves only bones and superficial tissues (skin and tissue just beneath the skin); these appear to have low risk of Kasabach-Merritt phenomenon.
Researchers are still searching for the cause of KHE. It is not inherited, and while it typically occurs in infancy, KHE can arise prenatally or in adults after trauma.
Kaposiform hemangioendothelioma: Reviewed by Cameron C. Trenor III, MD, © Boston Children's Hospital, 2016
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