Osler-Weber-Rendu syndrome

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Circulatory system

Hereditary hemorrhagic telangiectasia

Bleeding in vital areas must be corrected surgically. Frequent or heavy nosebleeds (epistaxis) may be treated with electrocautery or laser surgery. Large collections of abnormal blood vessels (arterio-venous malformations) in the lungs may be deliberately clotted off in a procedure called coiling, which is performed by an interventional radiologist.

Some patients respond to estrogen therapy, which can reduce bleeding episodes. Blood-thinning medications should be avoided. Some patients may need to take antibiotics during simple dental or surgical procedures. Ask your doctor what precautions you should take.

HHT Foundation International, Inc. www.hht.org; 800-448-6389

Barring a fatal intracranial hemorrhage, this syndrome is compatible with a normal lifespan. Many patients do not know that they have this condition until a family member is diagnosed with it.

• Internal hemorrhaging
• Marked increased risk for nose bleeds
• Coughing up blood
• Increased risk for strokes and infections of the brain
• Heart failure
• Shortness of breath
• High blood pressure in the lungs (pulmonary hypertension)

Call your health care provider if your child has frequent nose bleeds or other signs of this disease.

Review Date: 04/20/2005
Reviewed By: Neal Sondheimer, M.D., PhD., Division of Genetics and Metabolism, Children's Hospital of Philadelphia, Philadelphia, PA. Review provided by VeriMed Healthcare Network.