Living With Hemophilia
If you or your child has hemophilia, you can take
steps to prevent bleeding problems. Thanks to improvements in treatment, a
child with hemophilia today is likely to live a normal lifespan.
Hemophilia Treatment Centers
A nationwide network of hemophilia treatment centers
(HTCs), funded by the Federal Government, is an important resource for families
and people affected by hemophilia. The medical experts in HTCs provide
treatment, education, and support. They can teach you or your family member how
to do home treatments. Center staff also can provide information to your
doctor.
People who get care in HTCs are less likely than
those who get care elsewhere to have bleeding complications and
hospitalizations, and theyre more likely to have a better quality of
life. This may be due to the centers emphasis on prevention of bleeding
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:
- Nurse coordinators
- Pediatricians and adult and pediatric
hematologists (doctors who specialize in blood disorders)
- Social workers (who can help with financial
issues, transportation, mental health, and other issues)
- Physical therapists and orthopedists (doctors who
specialize in disorders of the bones and joints)
- Dentists
To find an HTC located near you, go to the
directory of HTCs on the Centers for Disease Control and
Prevention Web site. Many people with hemophilia go to an HTC for annual
checkups, even if it means traveling some distance to do so.
At an HTC, you or your child may be able to
participate in clinical research and benefit from the latest research findings
about hemophilia treatment. The HTC team also will work with your local health
care providers to help meet your needs or your childs needs.
Ongoing Health Care Needs
To avoid complications, its important that
people who have hemophilia:
- Continue any treatment prescribed for
hemophilia.
- Get regular checkups and vaccinations as
recommended. Vaccines for hepatitis A and B are recommended for those who are
treated with blood transfusions. There is currently no vaccine for hepatitis C.
- Tell all of your health care providers, such as
your doctor, dentist, and pharmacist, that you have hemophilia. You also may
want to tell people like your employee health nurse, gym trainer, and sports
coach about your condition.
- Get regular dental care. Dentists at the HTCs are
experts in providing dental care for people who have hemophilia. If you see
another dentist, tell the dentist that you or your child has hemophilia. The
dentist can provide medicine that will reduce bleeding during dental work.
- Know the signs
and symptoms of bleeding in joints and other parts of the body and when to
call the doctor or go to the emergency room.
Contact your doctor or go to the emergency room
for:
- Heavy bleeding that cant be stopped or a
wound that continues to ooze blood.
- Any signs or symptoms of bleeding in the brain.
Such bleeding is life threatening and requires immediate emergency care.
- Limited motion, pain, or swelling of any
joint.
Its 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.
When Your Child Is Diagnosed With Hemophilia
Expect emotional, financial, social, and other
strains as you adjust to the situation of having a child with 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 in emergencies.
- Take advantage of the care teams at the HTCs for
education and support as well as treatment. 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 with hemophilia and for family members. Some groups
offer summer camps for children with hemophilia. Ask your doctor, nurse
coordinator, or social worker about these groups and camps, or contact your
local chapter of the
National Hemophilia Foundation.
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 thats at his or her
level. Children with hemophilia also need to be reassured that the condition
isnt their fault and given support for having a chronic health
problem.
Young children with hemophilia need extra protection
from things in the home and elsewhere that could cause injuries and lead to
bleeding:
- Protect toddlers with kneepads, elbow pads, and
protective helmets. All children should wear safety helmets when riding
tricycles or bicycles.
- Be sure to use the safety belts and straps in
highchairs, car seats, and strollers to protect the child from falls.
- Remove furniture with sharp corners or pad them
while the child is a toddler.
- Keep out of reach or locked away small and sharp
objects and other items that could cause bleeding or harm.
- Check play equipment and outdoor play areas for
possible hazards.
You also need to learn how to examine your child for
and recognize signs of bleeding as well as prepare for bleeding episodes when
they do 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 will 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 childs
babysitters, daycare providers, teachers, other school staff, and coaches or
leaders of afterschool activities about when to contact you or to call
911 for emergency care.
Consider having your child wear a medical ID
bracelet or necklace. If your child is injured, the ID will alert anyone caring
for your child about the condition.
Physical Activity and Hemophilia
Physical activity helps keep muscles flexible,
strengthens joints, and helps maintain a healthy weight. Children and adults
with hemophilia should get regular physical activity, but they may have limits
on what they can do safely.
People with mild hemophilia can participate in a
variety of activities. Those with severe hemophilia should avoid contact sports
and other activities that are likely to lead to injuries that could cause
bleeding.
The physical therapist at the HTC can develop an
exercise program 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.
To prevent bleeding, you also may be able to take
clotting factors prior to exercise or a sporting event.
In general, some safe physical activities are
swimming, biking (wear a helmet), walking, and golf.
Activities that arent usually considered safe
for those with bleeding problems include most contact sports, such as football,
hockey, and wrestling.
Medicine Precautions
Some medicines increase the chance for bleeding. You
should avoid medicines such as:
- Aspirin and other drugs that contain salicylates
(sa-LIH-sil-ates)
- Ibuprofen (EYE-boo-pro-fen), naproxen, and some
other nonsteroidal anti-inflammatory drugs
For more information about medicines to avoid, talk
to your doctor or pharmacist.
Treatment at Home and When Traveling
Home treatment with replacement therapy has many
benefits. It lets you treat bleeding early before complications are likely to
develop. Home treatment also can save you from having to make frequent trips to
the doctors office or hospital. This can give you more independence and a
sense of control over your hemophilia.
But if youre treating yourself or your child
with clotting factors at home, you should take some precautions:
- Follow instructions for storage, preparation, and
use of clotting factors and treatment materials.
- Keep a record of all medical treatment.
- Know the signs and symptoms of bleeding,
infection, or an allergic reaction, and how to respond appropriately.
- Have someone with you when you treat
yourself.
- Know when to call the doctor or
911.
When youre traveling, be sure to take enough
treatment materials along. You should carry with you a letter from your doctor
describing your hemophilia and treatment. Its also a good idea to find
out in advance where to go for care when out of town.
Cost Issues
Clotting factors are very costly, and many health
insurance companies will only pay for clotting factors on a case-by-case basis.
Its important to know:
- What your insurance covers
- Whether your insurance has a limit on the dollar
amount it will cover and what that amount is
- Whether there are restrictions or waiting
periods
As children grow, its important to learn about
available options for insurance. Look into what kinds of health insurance are
offered when seeking a job. |