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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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:
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. Approximately 70% of hemophilia cases are
inherited, while 30% are due to spontaneous mutations.* 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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What is
prophylaxis?
Prophylaxis is the regular use of clotting factor concentrates to prevent bleeds
before they start. Injections of clotting factor are given one, two or three times
a week to maintain a constant level of factor VIII or IX in the bloodstream. Prophylaxis
can help reduce or prevent joint damage over time. In countries with access to adequate
quantities of clotting factor concentrates, this is becoming the normal mode of treatment
for younger patients. Prophylaxis and can be started when the veins are well developed
(usually between the ages of two and four years) and the child will tolerate repeated
infusions.
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What is a Port?
A port-a-cath, or implantable venous access device (IVAD), is implanted under the skin,
usually in the upper chest but there are models which can be inserted into the arm.
It has a small metal reservoir with a rubber diaphragm connected to a catheter,
which is then threaded into a large vein in the chest or arm. The entire device
is surgically implanted under the skin so there is no part of it that hangs out
of the body. The device provides ready access to a vein for administering medications
and fluids intravenously. It can also be used for drawing blood samples. The device
is accessed by inserting a special needle through the skin and into the rubber diaphragm
of the reservoir. The medication or fluid is injected into the device and it flows
through the catheter into the vein. These devices have made prophylaxis in hemophilia
much easier for families because the problems of "finding a vein" for infusion two to
three times a week are eliminated. However, there are risks involved with their use,
the most worrisome being that of infection. Studies differ but some show an infection
rate as high as 50 percent. These infections can usually be treated with intravenous
antibiotics but sometimes the device must be removed. Also, there are other studies
that show a risk of clots forming at the tip of the catheter. Still, many families
have chosen to use the device in spite of the risk because of the benefits of prophylaxis.
Like any other procedure, one must weigh the risks and benefits.
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What are
inhibitors?
Inhibitors are antibodies to factor VIII or factor IX made by the body’s immune system
that attack and inactivate the factor VIII and IX proteins in replacement clotting factor
concentrates, making treatment ineffective. They appear almost exclusively in patients
with severe hemophilia. There is some controversy over the precise incidence (number
of new cases per year) of inhibitor development, but it is generally accepted that
between 10 and 30 percent of people with severe hemophilia A will develop inhibitors
at some stage. By contrast, inhibitor development in hemophilia B is rare, developing
only in 1 to 3 percent of patients. Most inhibitors emerge after relatively few treatments.
In general, the more treatments a person has had without developing inhibitors,
the less likely he is to develop an inhibitor. Treatments exist that can sometimes
eliminate inhibitors. In some cases, they disappear naturally; in other cases,
they continue for many years, complicating treatment.
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What is
Immune Tolerance
Protocol?
Many healthcare providers believe that ridding of the body of inhibitors is the best
option. This is done using a course of therapy known as "immune tolerance." There are
different treatment programs used for immune tolerance, all of which require repeated
exposure to the deficient clotting factor. People who opt for immune tolerance expose
themselves to daily doses of factor over a period of weeks, months, or in some cases,
years. The risks and benefits of each treatment program and the medications used should
be discussed in detail with a healthcare provider. The goal of immune tolerance therapy
is eventually to "teach" the body to tolerate the factor and not to mount an immune
response. If immune tolerance is successful, only normal replacement therapy can be
used to prevent or control bleeding. Overall, immune tolerance treatment is highly
effective and is successful in approximately 60% to 80% of patients.
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