Hemophilia is a disorder of your blood-clotting system. Clotting is the process by which your blood changes from a liquid to a solid state.
There are several types of hemophilia. All types can cause prolonged bleeding. If you have hemophilia and you have a cut, you'll bleed for a longer time than you would if your blood clotted normally. Small cuts usually aren't much of a problem. The greater health concern, particularly with hemophilia A and B, is deep internal bleeding and bleeding into joints.
Hemophilia is a lifelong disease, but with proper treatment and self-care, most people with hemophilia can maintain an active, productive lifestyle.
Signs and symptoms of hemophilia vary depending on how deficient you are in clot-forming proteins called clotting factors. If levels of your deficient clotting factor are very low, you may experience spontaneous bleeding. If levels of your deficient clotting factor are slightly to moderately low, you may bleed only after surgery or trauma.
Signs and symptoms of spontaneous bleeding may include:
Emergency signs and symptoms of hemophilia may include:
Babies with hemophilia
When to see a doctor
If you have a baby boy, prolonged bleeding following circumcision may be the first indication of hemophilia. In girls and in boys who aren't circumcised, easy bruising when the child becomes more mobile may lead to the diagnosis. The first episode of bleeding generally occurs by the time a child is 2 years old. If your baby bruises easily as he or she becomes more mobile, see your doctor.
When you're cut or bleeding internally, your body normally pools blood cells together to form a clot to stop the bleeding. This process is called coagulation. Coagulation involves blood particles called platelets and plasma proteins that encourage clotting (clotting factors). The cause of hemophilia is a deficiency of one of these clotting factors. Which type of hemophilia you have depends on which clotting factor is deficient:
Complications may occur from the condition or from the treatment for the condition:
Preparing for your appointment
Hemophilia is diagnosed at an average age of 9 months and almost always by age 2. If your child has heavy bleeding that can't be stopped after an injury, call 911 or your local emergency number or go to an emergency room.
If your child's symptoms are less severe — such as bruising that seems excessive after minor injuries — call your family doctor or your child's pediatrician. In some cases when you call to set up your appointment, you may be referred to a doctor who specializes in bleeding disorders (hematologist) or to a hemophilia treatment center.
Comprehensive hemophilia treatment centers
No matter what type of doctor you initially see, here's some information to help you prepare for the appointment.
What you can do
For hemophilia, some basic questions:
In addition to the questions that you've prepared to ask your child's doctor, don't hesitate to ask any additional questions that occur to you during your appointment.
What to expect from your child's doctor
What you can do in the meantime
Tests and diagnosis
For people with a family history of hemophilia, it's possible to test the fetus during pregnancy to determine if it is affected by the disease. However, such testing poses some risk to the fetus. Discuss the benefits and risks of testing with your doctor.
Analysis of a blood sample from either a child or an adult can show a deficiency of a clotting factor. Sometimes mild hemophilia isn't diagnosed until after a person has undergone surgery and excessive bleeding results.
Treatments and drugs
While there's no cure for hemophilia, most people with the disease can lead fairly normal lives.
Hemophilia treatment varies depending on the severity of the condition:
Regular preventive infusions of a clotting factor may help prevent bleeding. This approach may reduce time spent in the hospital and away from home, work or school and limit side effects such as damage to joints. Your doctor or child's doctor can train you to perform infusions of desmopressin or the clotting factor at home, work or school.
Another class of drugs called antifibrinolytics is sometimes prescribed along with clotting factor replacement therapy. These medications help prevent clots from breaking down.
If internal bleeding has damaged joints, physical therapy can help them function better. Therapy can preserve their mobility and help prevent frozen or badly deformed joints. In cases where repeated bouts of internal bleeding has damaged or destroyed joints, an artificial joint may be needed.
For minor cuts
Lifestyle and home remedies
These steps may help you avoid excessive bleeding and protect your joints:
Coping and support
Get a medical alert bracelet for you or your child and be sure it's worn at all times. This bracelet lets medical personnel know that you or your child has hemophilia and the type of clotting factor that's best in case of an emergency.
These tips can help you and your child cope with hemophilia:
Last Updated: 2011-08-31
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