How does it feel to live with Fanconiaanemia?

By  ,  National Institute of Health
Jan 17, 2013

Improvements in blood and marrow stem cell transplants have increased the chances of living longer if you have FA. Other new treatments also are being developed that hold promise.


However, 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 who have FA and their families. If you or your child is diagnosed with FA, you and your family members may feel shock, anger, grief, and depression. If you're the parent or grandparent of a child who has FA, you may blame yourself for causing the disease.


Your doctor will want to test all of your children for FA if one of your children is born with the disorder. If you're diagnosed with FA as an adult, your doctor may recommend that your brothers and sisters be tested for the disorder.


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 that FA can cause.


One of the hardest 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 disorder in terms they can understand. These groups recommend answering questions 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.

Special Concerns and Needs


Many people who have FA survive to adulthood. If you have FA, you'll need ongoing medical care. Your blood counts will need to be checked 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'll need to be screened for these cancers more often than people who don't have FA.


If FA has left you with a very low platelet count, 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 the 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.


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