Improvements in blood and marrow stem cell transplants have increased the chances of living longer with FA. Also, researchers are studying new and promising treatments for FA. However, the disorder still presents serious challenges to patients and their families.
FA is a life-threatening illness. 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 suggest testing your brothers and sisters 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.
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 act out after learning that he or she has FA, you may want to seek counseling.
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.
Even if you have a blood and marrow stem cell transplant, you remain at risk for many cancers. You'll need to be screened for cancer 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 can lead to injuries.
If your child has FA, he or she may have problems eating or keeping food down. Your doctor may recommend additional, special feedings to support growth and good health.
You or your family members may find it helpful to know about resources that can give you emotional support and helpful information about FA and its treatments.
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 (treatment for FA can be costly).
Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Fanconi Anemia, visit www.clinicaltrials.gov.
Visit Children and Clinical Studies to hear experts, parents, and children talk about their experiences with clinical research.
December 9, 2013
Gary H. Gibbons
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The NHLBI updates Health Topics articles on a biennial cycle based on a thorough review of research findings and new literature. The articles also are updated as needed if important new research is published. The date on each Health Topics article reflects when the content was originally posted or last revised.