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 GameSM (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.”
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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.
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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.
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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.
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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!
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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.
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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.
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