Coping with DBA

Adapted with gratitude from the original article by Lynn and Dave Frohnmayer on "Coping with Fanconi Anemia," Third Edition 2000 of "Fanconi Anemia: A Handbook for Families and Their Physicians." Coping With Diamond Blackfan Anemia Living with the fact that your child has a potentially life-threatening illness is the most difficult challenge most of us have ever confronted. Your life changes immediately and completely. No longer do you have the luxury of worrying about the things that demand the time and attention of friends and neighbors. Initially, your concerns and energies focus narrowly on the life and health of your child or children. You probably feel isolated and alone. Maybe you sense that you have little in common with anyone else. Depression, fear, and anxiety about the future are your daily companions. Previously close marriages experience incredible strain, as each spouse copes in his or her own way with this devastating news. Each partner may feel a tremendous need for support, yet have little energy to meet the emotional needs of the other. What are Common Reactions to the Diagnosis of Diamond Blackfan? The initial diagnosis of DBA causes shock, bewilderment, denial, anger, and feelings of helplessness in the affected family. That is totally understandable.  Many parents also experience intense feelings of guilt and shame over their child’s diagnosis. But this is not a time for self-blame. Every person carries several lethal genes. Only an unpredictable pattern of inheritance caused this rare event. You had no way to prevent it or know of it, and no reason to apologize for it. Remember that members of the extended family, such as grandparents, may feel responsible for your child’s illness. Just as you should not blame yourself for this diagnosis, others need to know that it is not their fault, either. What Should the DBA Child be Told About the DBA Condition and Treatment? You should consider this issue with care, because there is no “right” answer. The age of the child and his or her interest and ability to understand the diagnosis should be considered. Some young patients are satisfied with basic information and let you know when they no longer want to discuss their illness. Other youngsters want to know much more. Some deeply resent tearful or anxious whispered conferences outside their hearing. Their fears may become even more exaggerated and emotionally destructive when they feel that information is being withheld from them. As a general rule, we believe that most children need and want to have information about this illness. The subject should be discussed in terms they can understand. Parents and caregivers should answer a child’s questions in a supportive, yet direct and honest, fashion. It is helpful to stress the positives as well. Patients need to know that research is moving ahead rapidly and that there will be improved therapies for this disorder. Whenever possible, we must convey our own sense of hopefulness. When children react to living with this disorder with emotional distress and behavioral problems, a professional counselor can be extremely helpful. What About the Reactions of Siblings or Other Family Members? Remember that a serious disorder such as DBA affects the entire family, not just the patient. Each family member needs his or her own emotional support. Each member of the family may grieve and worry about the DBA diagnosis in very different ways: some with tears, some with silence and withdrawal, some with anger. These emotions are all natural. Each person must be allowed to grieve and express feelings in his or her own way. Each family member needs a good “listening ear” and should be given permission—even encouraged—to express feelings openly. And everyone should look for support systems with friends and community, not just within the family! What Should the Extended Family be Told? You must judge this for yourselves. We have disclosed information freely, and gained invaluable emotional support and concrete help from extended Family. We recommend that you “take the risk” of disclosure; we think you will be rewarded by Family support and understanding. Where Else Can I Go for Emotional or Other Support? Families can often take advantage of local resources and support groups. Your physician or hospital should be able to direct you to the appropriate resources in your community. What Else Can Help in Coping with This Diagnosis? It is often said, but bears repeating: take care of yourself. Take care of your health (eat well, exercise, avoid destructive habits). Learn to lean on friends and relatives for support, and share your emotions openly, if possible. Make an effort to enjoy the activities and interests which gave you pleasure before the diagnosis of DBA. Try not to make coping with this illness your entire existence (in times of medical crisis, this is impossible). Remember that your spouse and other children need some of your time and attention, too. If possible, try not to ruin the present with constant worries about the future. Remember that the future is uncertain, that scientific research is advancing rapidly, and that an earlier prediction about your child’s future may not prove accurate. Try to maintain a sense of optimism—for yourself and for your Family. Remember that your child is first and foremost a child, who also has DBA. Treat your child as you would a child without this diagnosis, to the extent that it is possible. With medical advice and good common sense, allow your child to live as fully and normally as possible. Finally, we have found it very therapeutic to work on trying to change the course and outcome of this illness. We are not interested in assuming the role of powerless “victim.” By playing an active part in the support group and by raising desperately needed funds for research, you may regain some sense of control. You can enjoy the psychological benefits of helping to work on a cure for this illness.