Living With Hemophilia

If you or your child has hemophilia, you can take steps to prevent bleeding problems. Thanks to improvements in treatment, a child with hemophilia today is likely to live a normal lifespan.

Hemophilia Treatment Centers

A nationwide network of hemophilia treatment centers (HTCs), funded by the Federal Government, is an important resource for families and people affected by hemophilia. The medical experts in HTCs provide treatment, education, and support. They can teach you or your family member how to do home treatments. Center staff also can provide information to your doctor.

People who get care in HTCs are less likely than those who get care elsewhere to have bleeding complications and hospitalizations, and they’re more likely to have a better quality of life. This may be due to the centers’ emphasis on prevention of bleeding and the education and support provided to patients and their caregivers.

More than 100 federally funded HTCs are located throughout the United States. Many HTCs are located at major university medical and research centers. The hemophilia teams at these centers include:

• Nurse coordinators
• Pediatricians and adult and pediatric hematologists (doctors who specialize in blood disorders)
• Social workers (who can help with financial issues, transportation, mental health, and other issues)
• Physical therapists and orthopedists (doctors who specialize in disorders of the bones and joints)
• Dentists

To find an HTC located near you, go to the directory of HTCs on the Centers for Disease Control and Prevention Web site. Many people with hemophilia go to an HTC for annual checkups, even if it means traveling some distance to do so.

At an HTC, you or your child may be able to participate in clinical research and benefit from the latest research findings about hemophilia treatment. The HTC team also will work with your local health care providers to help meet your needs or your child’s needs.

Ongoing Health Care Needs

To avoid complications, it’s important that people who have hemophilia:

• Continue any treatment prescribed for hemophilia.
• Get regular checkups and vaccinations as recommended. Vaccines for hepatitis A and B are recommended for those who are treated with blood transfusions. There is currently no vaccine for hepatitis C.
• Tell all of your health care providers, such as your doctor, dentist, and pharmacist, that you have hemophilia. You also may want to tell people like your employee health nurse, gym trainer, and sports coach about your condition.
• Get regular dental care. Dentists at the HTCs are experts in providing dental care for people who have hemophilia. If you see another dentist, tell the dentist that you or your child has hemophilia. The dentist can provide medicine that will reduce bleeding during dental work.
• Know the signs and symptoms of bleeding in joints and other parts of the body and when to call the doctor or go to the emergency room.

Contact your doctor or go to the emergency room for:

• Heavy bleeding that can’t be stopped or a wound that continues to ooze blood.
• Any signs or symptoms of bleeding in the brain. Such bleeding is life threatening and requires immediate emergency care.
• Limited motion, pain, or swelling of any joint.

It’s a good idea to keep a record of all previous treatments. Be sure to take this information with you to medical appointments and to the hospital or emergency room.

When Your Child Is Diagnosed With Hemophilia

Expect emotional, financial, social, and other strains as you adjust to the situation of having a child with hemophilia. Learn all you can about the disorder and get the support you need.

• Talk with doctors and other health care providers about treatment, prevention of bleeding, and what to do in emergencies.
• Take advantage of the care teams at the HTCs for education and support as well as treatment. The social worker on the team can help with emotional issues, financial and transportation problems, and other concerns.
• Seek the many resources available through the Web, books, and other materials, including those provided by national and local hemophilia organizations.
• Look into support groups that offer a variety of activities for children with hemophilia and for family members. Some groups offer summer camps for children with hemophilia. Ask your doctor, nurse coordinator, or social worker about these groups and camps, or contact your local chapter of the National Hemophilia Foundation.

Challenges will occur as your child grows and becomes more active. In addition to treatment and regular health and dental care, your child needs information about hemophilia that’s at his or her level. Children with hemophilia also need to be reassured that the condition isn’t their fault and given support for having a chronic health problem.

Young children with hemophilia need extra protection from things in the home and elsewhere that could cause injuries and lead to bleeding:

• Protect toddlers with kneepads, elbow pads, and protective helmets. All children should wear safety helmets when riding tricycles or bicycles.
• Be sure to use the safety belts and straps in highchairs, car seats, and strollers to protect the child from falls.
• Remove furniture with sharp corners or pad them while the child is a toddler.
• Keep out of reach or locked away small and sharp objects and other items that could cause bleeding or harm.
• Check play equipment and outdoor play areas for possible hazards.

You also need to learn how to examine your child for and recognize signs of bleeding as well as prepare for bleeding episodes when they do occur. Keep a cold pack in the freezer ready to use as directed or to take along with you to treat bumps and bruises. Popsicles work fine when there is minor bleeding in the mouth. You also might want to keep a bag ready to go with items you will need if you must take your child to the emergency room or elsewhere.

Be sure that anyone who is responsible for your child knows that he or she has hemophilia. Talk with your child’s babysitters, daycare providers, teachers, other school staff, and coaches or leaders of afterschool activities about when to contact you or to call 9–1–1 for emergency care.

Consider having your child wear a medical ID bracelet or necklace. If your child is injured, the ID will alert anyone caring for your child about the condition.

Physical Activity and Hemophilia

Physical activity helps keep muscles flexible, strengthens joints, and helps maintain a healthy weight. Children and adults with hemophilia should get regular physical activity, but they may have limits on what they can do safely.

People with mild hemophilia can participate in a variety of activities. Those with severe hemophilia should avoid contact sports and other activities that are likely to lead to injuries that could cause bleeding.

The physical therapist at the HTC can develop an exercise program tailored to your needs and teach you how to exercise safely. Talk with your doctor or physical therapist about recommended types of physical activity and sports.

To prevent bleeding, you also may be able to take clotting factors prior to exercise or a sporting event.

In general, some safe physical activities are swimming, biking (wear a helmet), walking, and golf.

Activities that aren’t usually considered safe for those with bleeding problems include most contact sports, such as football, hockey, and wrestling.

Medicine Precautions

Some medicines increase the chance for bleeding. You should avoid medicines such as:

• Aspirin and other drugs that contain salicylates (sa-LIH-sil-ates)
• Ibuprofen (EYE-boo-pro-fen), naproxen, and some other nonsteroidal anti-inflammatory drugs

For more information about medicines to avoid, talk to your doctor or pharmacist.

Treatment at Home and When Traveling

Home treatment with replacement therapy has many benefits. It lets you treat bleeding early before complications are likely to develop. Home treatment also can save you from having to make frequent trips to the doctor’s office or hospital. This can give you more independence and a sense of control over your hemophilia.

But if you’re treating yourself or your child with clotting factors at home, you should take some precautions:

• Follow instructions for storage, preparation, and use of clotting factors and treatment materials.
• Keep a record of all medical treatment.
• Know the signs and symptoms of bleeding, infection, or an allergic reaction, and how to respond appropriately.
• Have someone with you when you treat yourself.
• Know when to call the doctor or 9–1–1.

When you’re traveling, be sure to take enough treatment materials along. You should carry with you a letter from your doctor describing your hemophilia and treatment. It’s also a good idea to find out in advance where to go for care when out of town.

Cost Issues

Clotting factors are very costly, and many health insurance companies will only pay for clotting factors on a case-by-case basis. It’s important to know:

• What your insurance covers
• Whether your insurance has a limit on the dollar amount it will cover and what that amount is
• Whether there are restrictions or waiting periods

As children grow, it’s important to learn about available options for insurance. Look into what kinds of health insurance are offered when seeking a job.