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Hemophilia is a genetic blood disorder in which the blood does not clot properly.
It usually runs in families. But there are times a person may be the first one in their family to develop hemophilia.
Certain proteins in the blood help platelets stick together to form clots. These proteins are called factors. Hemophilia is caused by a change (called a mutation) in a gene that provides instructions to proteins to form clots in the blood. This means the blood does not clot fast enough when tissue is injured.
Hemophilia results in soft, unstable clots or no clot forming at all.
The 3 most common types of hemophilia are:
People with hemophilia do not typically bleed faster than other people. They just bleed for a very long time.
There are 3 types of hemophilia A and B. They are based on the amount of factor VIII or factor IX a child has:
If you have a family history of blood disorders, your child should be tested. If a child has severe hemophilia, the family will usually find out at birth or by the time the child is a toddler. Testing for hemophilia can happen soon after birth.
If your family has a history of bleeding disorders, your child’s care team will likely order blood tests. These tests check how well your child’s blood clots.
Sometimes, even infants with no family history of bleeding disorders can have a spontaneous mutation. These infants are screened when members of the family or care team members notice symptoms.
According to the Centers for Disease Control and Prevention, symptoms in infants might include:
If your child is diagnosed with hemophilia, they will have a specialist called a hematologist. A hematologist is a doctor who specializes in treating blood disorders.
This doctor does blood tests and writes the prescription for factor medicine, as needed. Factor medicine can help clot blood by replacing the missing proteins from their blood.
Children with severe hemophilia will need factor medicine infusions up to 3 times each week.
How often your child needs these infusions will depend on what your child’s care team thinks is best.
You must always have factor medicine supplies on hand if your child has a bleeding disorder. This is important in both emergency and non-emergency situations if your child is injured.
You can infuse the factor medicine at home. You should always infuse first. Even when you are in the emergency room, the infusion should take priority over X-ray, labs, or other tests.
In an emergency, like a head injury, take your child and the factor medicine you have to the nearest emergency room.
The emergency room care team will mix and infuse the factor treatment through an IV in your child’s arm. This gives your child the factor.
If your child has a minor injury, infuse the factor medicine yourself first at home.
Then do RICE steps:
You can help prevent pain, swelling, and potential joint damage if you infuse and follow-up with the RICE steps quickly.
Joint bleeds are the most common type of bleeds in people with hemophilia. These bleeds can happen in any joint. But they are most common in the knees, elbows, and ankles.
Treating these bleeds is vital because they can damage the joint.
If you suspect a joint bleed, treat your child with factor at home immediately. Then:
Call your child’s care team if you are unsure about your next steps.
Reviewed: September 2022