What Is Everyday Life Like With Hemophilia?

According to the the National Institutes of Health, hemophilia is a rare bleeding disorder, normally occurring in males. Hemophiliacs lack one of the components of blood that enables it to clot, and prolonged bleeding can result. The type of hemophilia, A, B or C, depends on which blood-clotting factor is deficient.

Restricted Activity

• Hemophiliacs generally must abstain from such physical activities as contact sports, because an injury could be devastating. However, most hemophiliacs may remain active by swimming, golfing, walking and engaging in other low-impact activities that help build muscle and support joints.

Safety Precautions

• If your child has hemophilia, your doctor may recommend that he wear protective gear every day. Knee pads, elbow pads, helmets and belts may help prevent injury from accidents or falls. Also, your home should be free of sharp objects and furniture with sharp corners.

Self Checks

• For someone with hemophilia, an untreated injury that causes internal bleeding can be fatal. Hemophiliacs must watch for signs of a potential emergency, such as a large or deep bruise, joint pain and swelling, blood in the urine or stool. Symptoms that may indicate internal bleeding include nosebleeds, long-lasting headaches, vomiting, fatigue, neck pain and double vision.

Dental care

• Routine dental care, including daily brushing of teeth, can help prevent gum diseases that cause bleeding gums or infection. Meticulous dental care is a daily priority for someone living with hemophilia.

Counseling

• Dealing with hemophilia on a daily basis can be emotionally difficult for those recently diagnosed or for parents of a child with the disorder. Counseling and support groups can provide encouragement and help developing skills for daily living and coping with fears and depression. .

Treatment

• Although no cure for hemophilia exists, a few treatment options are available. Those with mild hemophilia may receive regular injections of a hormone or may use Desmopressin nasally to stimulate release of blood clotting factor. Those with more severe hemophilia may receive infusions of clotting factor from donated human blood or genetically engineered blood. Plasma infusions can stop bleeding episodes. Depending on the severity of hemophilia, infusions may be preventive and may be given two or three times a week.

Physical Therapy

• If someone with hemophilia has experienced internal bleeding that results in joint damage, physical therapy can help preserve mobility. Regular physical therapy at a clinic may be supplemented with daily, low-impact exercises at home.