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Hemophilia

Hemophilia
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Hemophilia is a bleeding disorder in which blood does not clot normally. Children with hemophilia have low levels of blood proteins that are necessary for clotting. These blood proteins, called factors, are either missing or lacking in patients with hemophilia.

There are two major types of hemophilia:

  • Hemophilia A. About 90 percent of people with hemophilia have hemophilia A. Hemophilia A is caused by a lack of clotting factor VIII.
  • Hemophilia B. This rare form of hemophilia is caused by a deficiency of clotting factor IX. Hemophilia B is also called Christmas disease (after the man who first diagnosed the condition).

Boys who inherit the hemophilia gene from a parent have hemophilia. Girls can have the condition or can carry the gene without having hemophilia. Girls who carry the hemophilia gene usually have normal levels of clotting factors but may show symptoms of the condition, such as bruising easily, heavy menstrual bleeding or frequent nosebleeds.

Although hemophilia is genetic, about a third of children with the condition have no family history of it. It is not clear how this happens, but it appears that a new mutation causes hemophilia when there is no family history of the condition.

Symptoms of hemophilia include:

  • Excessive bleeding of any kind
  • Blood in the urine or stool
  • Bruising easily and excessively
  • Nosebleeds

Major complications of hemophilia include:

  • Bleeding in the brain. Head trauma is an emergency for children with hemophilia. Bleeding inside the skull is the most common cause of death in children with hemophilia. Even a small bump on the head can cause a brain hemorrhage that can be life-threatening. Symptoms of a brain hemorrhage include:
    • Headache that is painful and lasts a long time
    • Vomiting repeatedly
    • Sleepiness
    • Double vision
    • Seizures
    • Weakness or clumsiness
  • Bleeding into joints. Bleeding into joints can cause swelling, warmth, pain and difficulty bending that joint. Eventually, joints can become deformed if the child is not treated for his or her hemophilia.
  • Bleeding into muscles. When blood builds up in the muscles, it can cause swelling and pain. Eventually, this swelling can cause damage to tissues and nerves.
  • Mouth bleeding. Teeth brushing and dental work can cause frequent bleeding from the gums.

Diagnosis of Hemophilia

In addition to a complete medical history and physical exam, your child's doctor may perform numerous blood tests. Blood tests performed by doctors at Riley at IU Health may include measuring clotting factor levels, taking a complete blood count (CBC) and/or performing DNA testing. Your child's doctor may ask for details about your family medical history. The medical and family history, physical exam and blood test results can help the doctor make a diagnosis.

Treatments

Treatments

Hemophilia is not curable at this time. Treatment can improve symptoms and the chance of dangerous bleeding in the head and joints. Prevention is also important to avoid dangerous bleeding. Treatment and prevention may include:

  • Rest, ice, compression and elevation. These easy but powerful interventions can reduce the pain and swelling of a bleed.
  • Replacement therapy. Infusions of concentrated clotting factor may be used to help treat a bleed but may also be used regularly to prevent bleeding. Replacement therapy may also be used before surgery and procedures.
  • Desmopressin. This medicine is a synthetic hormone similar to the naturally occurring hormone vasopressin. Desmopressin stimulates the body to produce more von Willebrand factor, which helps control bleeding.
  • Discontinuing aspirin and nonsterodial anti-inflammatory drugs (NSAIDs). These are mild blood thinners and can reduce the blood’s ability to clot.
  • Surgery. When blood accumulates in a joint, surgery can relieve the swelling caused by the hemorrhage
  • Blood transfusions. If your child has lost a significant amount of blood, a blood infusion can replace it.
  • Preventive dental care. Good oral hygiene can help prevent dental work and possible bleeding.
  • Subcutaneous immunizations. Giving immunizations under the skin (subcutaneous) rather than into muscle reduces the chance of bleeding in the muscle.
  • Joint strengthening. Regular activity and exercise can keep joints strong and prevent bleeds.
  • Participation in a clinical trial. Participation in a clinical trial for new medicines or hemophilia management strategies may be a treatment option.

For all types of hemophilia, your child’s doctor will suggest specific treatment based on:

  • Your child's age and health
  • The severity of the condition
  • Your child's tolerance for medicines and treatments
  • Likelihood of treatments working
  • Your opinions or preferences

Key Points to Remember

Key Points to Remember

For all types of hemophilia, your child’s doctor will suggest specific treatment based on:

  • Hemophilia is a bleeding disorder in which blood does not clot normally.
  • The two major types of hemophilia are hemophilia A and B.
  • Hemophilia A is caused by a lack of clotting factor VIII, and hemophilia B is caused by a deficiency of clotting factor IX.
  • Boys who inherit the hemophilia gene have hemophilia. Girls who inherit it may have hemophilia or carry the gene for hemophilia without developing the condition.
  • Hemophilia is not curable at this time, but treatment can improve symptoms and the chance of dangerous bleeding in the head and joints.  

Support Services & Resources

Support Services & Resources

Visit the resources below to learn more about hemophilia:

Riley at IU Health offers a broad range of supportive services to make life better for families who choose us for their children's care.

Learn More About Riley Support Services

National Hemophilia Foundation

This foundation is a national network of healthcare providers and patients and families living with hemophilia.

Hemophilia of Indiana

Hemophilia of Indiana is the local chapter of the National Hemophilia Foundation.

World Federation of Hemophilia

The World Federation of Hemophilia is a global network of healthcare providers, national hemophilia associations and patients and families living with hemophilia.


Locations

Locations

Locations

In addition to our primary hospital location at the Academic Health Center in Indianapolis, IN, we have convenient locations to better serve our communities throughout the state.

Riley Pediatric Cancer & Blood Disorders

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Departments Treating This Condition

Departments Treating This Condition

  • Cancer & Blood Disorders
  • Comprehensive Hematology Program
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