If you or your child has hemophilia, you can take steps to prevent bleeding problems. Thanks to improvements in treatment, a child who has hemophilia today is likely to live a normal lifespan.
The Federal Government funds a nationwide network of hemophilia treatment centers (HTCs). These centers are an important resource for people who have hemophilia and their families.
The medical experts at HTCs provide treatment, education, and support. They can teach you or your family members how to do home treatments. Center staff also can provide your doctor with information.
People who get care at HTCs are less likely than those who get care elsewhere to have bleeding complications and hospitalizations. They're also more likely to have a better quality of life. This may be due to the centers' emphasis on bleeding prevention 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:
To find an HTC located near you, go to the directory of HTCs on the Centers for Disease Control and Prevention's Web site. Many people who have hemophilia go to HTCs for annual checkups, even if it means traveling some distance to do so.
At an HTC, you or your child may be able to take part in clinical research and benefit from the latest hemophilia research findings. The HTC team also will work with your local health care providers to help meet your needs or your child's needs.
If you have hemophilia, you can take steps to avoid complications. For example:
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.
You may have emotional, financial, social, or other strains as you adjust to having a child who has 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 during an emergency.
The care teams at HTCs can provide your child with treatment and help educate and support you. 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 who have hemophilia and for family members. Some groups offer summer camps for children who have hemophilia. Ask your doctor, nurse coordinator, or social worker about these groups and camps.
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 he or she can understand.
Children who have hemophilia also need ongoing support, and they need to be reassured that the condition isn't their fault.
Young children who have hemophilia need extra protection from things in the home and elsewhere that could cause injuries and bleeding:
You also should learn how to examine your child for and recognize signs of bleeding. Learn to prepare for bleeding episodes when they 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'll 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.
Your child should wear a medical ID bracelet or necklace. If your child is injured, the ID will alert anyone caring for your child about his or her hemophilia.
Physical activity helps keep muscles flexible, strengthens joints, and helps maintain a healthy weight. Children and adults who have hemophilia should be physically active, but they may have limits on what they can do safely.
People who have mild hemophilia can take part in many activities. Those who have severe hemophilia should avoid contact sports and other activities that are likely to lead to injuries that could cause bleeding. Examples of these activities include football, hockey, and wrestling.
Physical therapists at HTCs can develop exercise programs 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. In general, some safe physical activities are swimming, biking (wearing a helmet), walking, and golf.
To prevent bleeding, you also may be able to take clotting factors prior to exercise or a sporting event.
Some medicines increase the risk of bleeding, such as:
Talk with your doctor or pharmacist about which medicines are safe for you to take.
Home treatment with replacement therapy has many benefits. It lets you treat bleeding early, before complications are likely to develop. Home treatment also can prevent frequent trips to the doctor's office or hospital. This can give you more independence and control over your hemophilia.
However, if you're treating yourself or your child with clotting factors at home, you should take some steps for safety:
When you're traveling, be sure to take enough treatment supplies along. You also should carry a letter from your doctor describing your hemophilia and treatment. It's a good idea to find out in advance where to go for care when out of town.
Clotting factors are very costly. Many health insurance companies will only pay for clotting factors on a case-by-case basis. It's important to know:
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.
Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Hemophilia, visit www.clinicaltrials.gov.
Visit Children and Clinical Studies to hear experts, parents, and children talk about their experiences with clinical research.
August 19, 2014
Gary H. Gibbons
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