Hereditary hemorrhagic telangiectasia
Other Names for this Disease
- Hereditary hemorrhagic telangiectasia type 1
- ORW disease
Your QuestionCan hereditary hemorrhagic telangiectasia (HHT) be treated?
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Questions on this page
Treatment of nosebleeds with humidification and nasal lubricants, laser ablation, septal dermoplasty, or estrogen-progesterone therapy can prevent anemia and allow individuals with HHT to pursue normal activities.
Individuals with GI bleeding are treated with iron therapy to maintain hemoglobin concentration; endoscopic application of a heater probe, bicap, or laser; surgical removal of bleeding sites; and estrogen-progesterone therapy. Iron replacement and red blood cell transfusions are used to treat anemia. Pulmonary AVMs with feeding vessels that exceed 3.0 mm in diameter require occlusion. Cerebral AVMs greater than 1.0 cm in diameter are treated by surgery, embolotherapy, and/or stereotactic radiosurgery. The treatment of choice for hepatic AVMs is liver transplantation.
Blood-thinning medications (anticoagulants) and anti-inflammatory agents should be avoided. Some patients may need to take antibiotics during simple dental or surgical procedures. Individual patients and their doctors should make decisions regarding these measures, as necessary.
Surveillance includes annual evaluations for anemia and neurologic conditions and re-evaluation for pulmonary AVMs every one to two years during childhood and every five years thereafter. Women with HHT considering pregnancy are screened and treated for pulmonary AVMs; if pulmonary AVMs are discovered during pregnancy, they are treated during the second trimester. 
Each Center provides medical services that are currently being provided at that facility, but will provide these services in a more organized and consistent fashion. The patients have access to physicians who specialize in all aspects of HHT.
To locate an HHT Treatment Center near you, visit the following link:
If you are not able to get to a HHT Center, a genetics professional can help to coordinate your care. You may also benefit from seeing specialists in pulmonary medicine, gastroenterology, and an ears, nose and throat specialist (ENT). Other specialists may be appropriate, depending on your symptoms.
Genetics clinics are a source of information for individuals and families regarding genetic conditions, treatment, inheritance, and genetic risks to other family members. More information about genetic consultations is available from Genetics Home Reference. To find a genetics clinic, we recommend that you contact your primary healthcare provider for a referral.
The following online resources can help you find a genetics professional in your community:
- GeneTests has a searchable directory of US and international genetics and prenatal diagnosis clinics.
- The National Society of Genetic Counselors provides a searchable directory of US and international genetic counseling services.
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The American Society of Human Genetics maintains a database of its members, which includes individuals who live outside of the United States. Visit the link to obtain a list of the geneticists in your country, some of whom may be researchers that do not provide medical care.
- Haldeman-Englert C. Osler-Weber-Rendu syndrome. MedlinePlus. 2009; http://www.nlm.nih.gov/medlineplus/ency/article/000837.htm. Accessed 7/22/2010.
- Hereditary hemorrhagic telangiectasia. Genetics Home Reference (GHR). 2007; http://ghr.nlm.nih.gov/condition%3Dhereditaryhemorrhagictelangiectasia. Accessed 7/22/2010.
- About HHT. HHT Foundation International. http://hht.org/about-hht/. Accessed 7/22/2010.
- McDonald J, Pyeritz RE. Hereditary Hemorrhagic Telangiectasia. GeneReviews. 2009; http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hht. Accessed 7/22/2010.