Hemophilia Frequently Asked Questions (FAQ)

Learning your child has hemophilia can bring up many questions. We’re here to help answer your questions and ensure you feel confident about your child’s care.

How can I learn more about your program?

We welcome you to call us at (650) 502-7028 and speak with a nurse in our program to get more information. You can also have your child’s hematologist or primary care doctor reach out to us to coordinate care.

What is hemophilia?

Hemophilia is typically an inherited bleeding disorder that causes spontaneous or excessive bleeding. People with hemophilia cannot produce adequate amounts of clotting factors, or proteins, most commonly factor VIII or factor IX. The severity of hemophilia ranges from mild to moderate to severe. Bleeding can occur anywhere in the body, most commonly in the joints and muscles, and can cause damage.

Children who receive regular care (including a comprehensive yearly evaluation and clotting factor products), get early treatment of bleeds, and maintain a healthy lifestyle can live an active, fulfilling life. There are several types of hemophilia, but the most common types are hemophilia A (factor VIII deficiency) and B (factor IX deficiency). To learn more, visit the National Hemophilia Foundation.

How do you diagnose hemophilia?

When you come to our multidisciplinary clinic, you’ll meet with a team of caregivers who will take a complete health history and run diagnostic tests, including blood tests to check for clotting factor levels. We’ll discuss your family’s history of bleeding disorders and your child’s personal history of bleeding. As needed, we will perform genetic testing. This comprehensive exam helps us determine the type and severity of hemophilia. We put our patients at the center of everything we do, so we always encourage questions and clarifications. We are happy to partner with your child’s primary care provider to determine the best treatment plan moving forward.

We put our patients at the center of everything we do, so we always encourage questions and clarifications. We are happy to partner with your child’s primary care provider to determine the best treatment plan moving forward.

What’s involved in receiving treatments for hemophilia?

Depending on your child’s type and severity of hemophilia, he or she will either receive a subcutaneous injection of an antibody drug or product or receive clotting factor intravenously with IV equipment in your home. For young children, a central line port delivers the blood product.

Treatment for hemophilia must be regularly maintained, requiring appointments that range from a few times a week for the low number of people who have severe hemophilia to once a year for milder cases. Our hemophilia team of caregivers stays in close touch with you to manage care, and we are always available for any questions or concerns you may have.

How do I know if my child develops an inhibitor?

Some children develop an antibody against factor VIII that causes it to stop working. That’s why we monitor children regularly for signs of inhibitors, which tend to run in families. If your child has a bleed that doesn’t get better, talk with your provider right away. Inhibitors develop in about 20% of children with hemophilia A and often present when they are young.

Is blood factor safe?

Over the years, blood factor treatments have evolved into clean, disease-free products, changing the way people with hemophilia live. Many patients today, including ours, receive recombinant DNA, a synthetic blood product, as standard of care.

Can my child with hemophilia play sports?

Yes. When your child’s hemophilia is maintained and closely monitored, we encourage children to be physically active and get involved in sports. We do, however, caution against contact sports and encourage safer, individual sports such as golf, swimming, and bicycling. With protective equipment and some caution, your child can enjoy sports.

What can I expect as my teenager with hemophilia ages?

Care for hemophilia has improved greatly over the years. Now, children with hemophilia have a normal life expectancy. Yet as people with hemophilia age, they will need extra care dealing with normal aging problems, so it’s important for your teenager to learn about his or her condition and understand how to manage it—something we help with in our teen transition program.

Adults will need to involve their hematology care team in any procedure where bleeding is a risk, such as dental work or colonoscopy, and in surgery planning, pre and post. Our joint adult hemophilia team is well versed in this care coordination.