Living with Fanconi Anaemia

Improvements in blood and marrow stem cell transplants have increased the chances of living longer with Fanconi Anaemia (FA). Researchers are also studying new and promising treatments for FA. The disorder still presents serious challenges to patients and their families.

 

What to Expect

FA is a life-threatening illness. If you or your child is diagnosed with FA, you and your family members may feel denial, shock, anger, grief, and depression.

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

All of these things can create stress and anxiety for your entire family. Family counselling 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 language 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 counselling

 

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. Do not skip one test; it is amazing how quick your counts can drop in a short period of time.

Even if you have a blood and bone marrow stem cell transplant, you remain at risk for many cancers. You will 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, taking part in any contact sports and other activities can lead to injuries and should thus be avoided.

If your child has FA, he or she may have problems eating or keeping food down. Your doctor may recommend additional, special feedings or diets to support growth and good health.

 

Support Groups

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 counselling and support services.