FAQs

Get answers to commonly asked questions below. For a more comprehensive look at hemophilia, check out Laureen Kelley’s book, Raising a Child with Hemophilia. And remember to bookmark this Web site and check back often for updated information on HemophiliaMoms.com!

Will my child be able to play at the playground or participate in sports?

Your child should be able to participate in normal activities, including organized sports. Before your child begins any physical activity, always consult with a doctor to make sure the activity is right for him. While high-impact contact sports such as football and hockey are not advised, he can get involved in swimming, baseball, golf, basketball, and biking, among others.

In fact, CSL Behring developed Gettin' in the Game^SM (GIG) to help kids with bleeding disorders play sports and get active. At local GIG events, kids and their families get sports tips from our national GIG athletes, participate in exercises, and meet other kids with bleeding disorders. GIG also has a Junior National Championship (JNC), held yearly at 4 locations throughout the US. Learn more about GIG or find a JNC event near you!

For more stories and articles about physical activity and your child, check out the section on Moms’ Stories by Topic and scroll down to “Hemophilia and Sports.”

Should we have more children?

When parents first hear "Your child has hemophilia,"’ it’s common to project into the future. Having a child with hemophilia is no reason not to have more children. For example, hemophilia mom Lori Kunkel decided to have two more children after her first son was diagnosed with severe hemophilia A. Both sons were diagnosed with hemophilia, but to the Kunkel family, “normal” means life with hemophilia. Read Lori’s story.

Do I need to find a childcare provider with special skills?

You can use any childcare provider that you deem as qualified. Just be sure to let them know they need to notify you immediately if your child has a bump or a fall. Read Doreen’s story, Challenges in Arranging Childcare.

Does my child have to go to a special school?

No, your child can attend school as he normally would. Just be sure to talk with the school office, faculty and medical staff, and let them know you need to be notified whenever he has a bump or a fall.

I’d like to talk to other parents of children with hemophilia. How can I find them?

Hemophilia treatment centers (HTCs) offer a wealth of resources, including support groups. Read about HTCs in the Moms’ Stories by Topic section and scroll down to “Hemophilia Treatment Centers.” You can also locate an HTC near you.

If you’d like to interact (virtually, that is) with other moms right now, check out Hemophilia Moms’ Blogs! Our featured moms are blogging (writing) about everything from self-infusion to dealing with in-laws to back-to-school concerns. You can even submit your own questions and comments! Go to Hemophilia Moms’ Blogs now.

Where can I learn more about hemophilia?

You’ll find a wealth of support and resources right here, at HemophiliaMoms.com! Access the Moms’ Resource Center for practical information on hemophilia. You can get tips on preparing for dental visits and procedures, and order educational materials about hemophilia, including several wonderfully illustrated books for children. In Moms’ Stories, read real stories from moms who talk candidly about raising a child with hemophilia. Or, access informational articles on safe exercise, creating family traditions, health insurance, and an array of other topics.

Check out these other resources on hemophilia:

www.HelixateFS.com
Raising a Child With Hemophilia, by Laureen A. Kelley. This book is packed with practical information, and it contains an extensive section on additional publications and resources! Order your own copy now!

How do people get hemophilia? Is it always inherited?

Hemophilia is usually inherited, and usually only by sons.* A father with hemophilia cannot pass it to his sons. A son can only get the hemophilia gene from his mother, if she is a “carrier.” Learn more about hereditary transmission of hemophilia.

*In rare cases, hemophilia can be acquired. Usually older adults are affected and the cause is typically an autoimmune disorder, cancer, or reaction to certain drugs. Joint bleeds in this kind of hemophilia are uncommon.

I’m a carrier. If my newborn son tests positive for hemophilia, does this mean he should not be circumcised?

A baby with hemophilia can be circumcised, but that decision is up to his parents. Some factors to consider are infection, pain, and the chance of prolonged bleeding. Many children with hemophilia do not have prolonged bleeding or other complications after circumcision. A decision should not be rushed into either way. You and your partner should discuss the pros and cons with a healthcare professional.