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Osler-Weber-Rendu syndrome |
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| Alternative Names: | Hereditary hemorrhagic telangiectasia
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| Treatment: | 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.
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| Support Groups: | HHT Foundation International, Inc. www.hht.org; 800-448-6389
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| Expectations (prognosis): | 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.
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| Complications: | - 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)
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| Calling your health care provider: | Call your health care provider if your child has frequent nose bleeds or other signs of this disease.
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Review Date: 8/6/2003
Reviewed By: Douglas R. Stewart, M.D., Division of Medical Genetics, Hospital of the University of Pennsylvania, Philadelphia, PA. Review provided by VeriMed Healthcare Network.
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The information provided herein should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Links to other sites are provided for information only -- they do not constitute endorsements of those other sites. Copyright 2003 A.D.A.M., Inc. Any duplication or distribution of the information contained herein is strictly prohibited.
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