Living With Fanconi Anemia
If you or your child has Fanconi anemia (FA), your
chances for survival have increased due to improvements in bone marrow
transplantation. In addition, other new treatments are being developed that
hold promise. But FA still presents serious challenges to patients and their
families.
What To Expect
FA is a life-threatening illness. This is an
emotionally difficult issue for people with FA and their families. If you or
your child is diagnosed with FA, you and your family members may experience
shock, anger, grief, and depression. If you're the parent or grandparent of a
child with FA, you may blame yourself for causing the disease.
Your doctor will want all of your children tested
for FA if one of your children is born with the disease. If you're diagnosed
with FA as an adult, your doctor will recommend that your brothers and sisters
be tested for the disease.
All of these things can create stress and anxiety
for your entire family. Family counseling for FA may give you and other
relatives important support, comfort, and advice that will help you deal with
the problems FA can cause.
One of the most difficult issues to deal with is
telling children that they have FA and what effect it will have on their lives.
Most FA support groups believe that parents need to give children information
about the disease in terms they can understand. These groups recommend that
questions be answered honestly and directly, stressing the positive
developments in treatment and survival.
If your child becomes upset or begins to develop
behavioral issues after learning that he or she has FA, you may want to seek
counseling from a therapist.
Special Concerns and Needs
Many people with FA live into adulthood. If you have
FA, you will require regular and ongoing medical attention. Your blood counts
will need to be monitored regularly. Although your body can use healthy bone
marrow cells from a donor to make the blood cells you need, you remain at risk
for many cancers. You will need to be screened for FA-related cancers more
often than people who don't have FA.
If FA has left you with very low levels of platelets
in your blood, your doctor may advise you to avoid contact sports and other
activities that carry the risk of physical injury.
If your child has FA, he or she may have problems
eating or keeping food down. Your doctor may recommend additional special
feedings to keep your child's weight at a level needed for ongoing development
and good health.
Support Groups
You or your family members may find it helpful to
know about resources that can give you emotional support as well as helpful
information about FA and its treatment. Your doctor or hospital social worker
may have information about counseling and support services. They also may be
able to refer you to support groups that offer help with financial planning,
because treatment for FA can be costly.
The
Fanconi Anemia Research Fund provides information about FA for
patients and their families. This group can provide you with the locations,
contact information, and services of FA treatment and testing locations around
the world. They publish “Fanconi Anemia: A Handbook for Families and
Their Physicians,” which provides information about FA and its causes,
symptoms, and treatments.
The
Cancer Fund of America may be able to provide financial aid if
you have problems paying for testing and treatment for FA-related cancers.
The
Children's Organ Transplant Association can help you or your
family pay for bone marrow transplants. |