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Diseases

Genetic and Rare Diseases Information Center (GARD)

Afibrinogenemia


Other Names for this Disease
  • Afibrinogenemia congenital
  • Congenital afibrinogenemia
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Treatment

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How might afibrinogenemia be treated?

There is no known prevention or cure for afibrinogenemia.[1] To treat bleeding episodes or to prepare for surgery to treat other conditions, patients may receive:[1][2]
  • The liquid portion of the blood (plasma)
  • Fibrinogen (RaiSTAP)
  • A blood product containing concentrated fibrinogen (cryoprecipitate) through a vein (transfusion)

Prophylactic therapy should also be considered for patients with recurrent bleeding episodes, CNS hemorrhage, or during pregnancy for women with recurrent miscarriage.[2]

Individuals with afibrinogenemia should consider the following as part of their management plan:

  • Consultation with a hematologist/hemostasis specialist, particularly for patients who require fibrinogen replacement therapy.[2]
  • Genetic counseling and family studies, especially for individuals with extensive family history or those considering pregnancy.[2]
  • Follow-up by a comprehensive bleeding disorder care team experienced in diagnosing and managing inherited bleeding disorders.[2]
  • Vaccination with the hepatitis B vaccine because transfusion increases the risk of hepatitis.[1]


Last updated: 5/31/2016

References
  1. Chen YB, Zieve D. Congenital afibrinogenemia. MedlinePlus. January 27, 2015; http://www.nlm.nih.gov/medlineplus/ency/article/001313.htm.
  2. Acharya SS. Inherited Abnormalities of Fibrinogen. Medscape Reference. November 18, 2014; http://emedicine.medscape.com/article/960677-overview.


Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Afibrinogenemia. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
Other Names for this Disease
  • Afibrinogenemia congenital
  • Congenital afibrinogenemia
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.