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.