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What is dysfibrinogenemia? 

Dysfibrinogenemia is a rare medical problem that affects blood clotting. If a person gets injured and bleeds,  their blood will form a gel-like plug (clot) that stops the bleeding. A protein called “fibrinogen” (Factor 1) helps form this clot. 

Blood clot showing hair-like fibrinogen clumping the red blood cells together.

Blood clot showing hair-like fibrinogen clumping the red blood cells together.

If your child has dysfibrinogenemia, their fibrinogen protein does not work properly.  Your child’s blood may have a problem forming these clots. This problem is passed down to a child from one of their parents. 

Another related problem, “acquired dysfibrinogenemia,” does not come from the parents. This comes from some cancers or treatments. Acquired dysfibrinogenemia can also happen if your child has an autoimmune disease (when the body’s immune system attacks itself).  

Symptoms of dysfibrinogenemia 

Children with dysfibrinogenemia: 

  • May have no symptoms at all 
  • Bleed more than usual 
  • Get more blood clots  

Testing for dysfibrinogenemia  

Your child’s doctor will ask for a medical history and look for signs of bleeding. Your doctor may also  examine your child and check to see if your child’s spleen is bigger than normal. The spleen is an organ that filters the blood and removes old blood cells. It can get bigger if your child has a disease that damages red blood cells, like dysfibrinogenemia. 

Your child may also get medical tests such as:  

  • A complete blood count (CBC) 
  • A blood test to measure the amount of fibrinogen protein in their blood 
  • Blood clotting tests 

Blood clotting tests (also called blood coagulation panels) measure the time it takes for a sample of blood to clot. This test shows if the fibrinogen protein is working correctly. Blood clotting tests include other blood tests like PT (prothrombin time), aPTT (activated partial thromboplastin time), and TCT (thrombin clotting time). These tests give the care team more detailed blood clotting information.

Treatment of dysfibrinogenemia  

Your child’s treatment will depend on their symptoms, their medical problem, and the family’s history of blood clotting and bleeding problems. Many people with dysfibrinogenemia do not need treatment. Your child might be treated with: 

  • Aminocaproic Acid (Amicar®) is a medicine that helps stop nosebleeds, gum bleeding, mouth and lip bleeds and heavy periods (menses) in females 
  • Heparin can help stop blood clots from forming if blood clots are forming too much. 
  • Cryoprecipitate, a blood product made by combining frozen blood and frozen blood plasma is used to help your child’s blood clot properly if they need surgery or are injured Purified plasma-derived fibrinogen concentrate. 

Bleeding Prevention Tips 

  • Do not give your child aspirin. Aspirin can cause more bleeding in people with dysfibrinogenemia.  
  • Your child should brush their teeth gently and often to prevent tooth decay and problems with their gums. Get regular dental check-ups for your child. 
  • Always contact your doctor if your child will have surgery or get a tooth pulled (extracted). The staff may do special things before and after the procedure. 
  • Your child should always wear a medical alert bracelet with information about their medical problems. 
  • Make your child wear protective equipment for physical activities. 
  • You should not let your child play sports with physical contact, such as boxing, hockey, soccer, and football. They could bleed more if injured.  

Key points about dysfibrinogenemia 

  • Dysfibriongenemia is a rare medical condition that affects blood clotting. 
  • Your child may have no symptoms, bleed more, or get blood clots 
  • Your child’s treatment will depend on their symptoms, their clotting problem, and their family history of blood clotting and bleeding problems. 
  • Your child must wear a medical alert bracelet listing their medical problems. 

For More Information

See “Factor 1”, National Hemophilia Foundation at

Reviewed: July 2022