Some Books for the Journey

Kathleen Flynn and Ann Robinson

Spring 1997

Myra Bluebond-Langner, in her new book, In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child, published by Princeton University Press last fall, addresses the following questions. What is it like to live with a child who has cystic fibrosis? What impact does CF have on well siblings in the family? Professor Bluebond-Langner, a medical anthropologist, explores the impact of CF on the family and how family members carry on with their lives despite the intrusion of the disease.

Through a series of interviews with nine families having children with cystic fibrosis, the author draws us into the lives of these families whose children are in different stages of the disease, from the diagnosis to the terminally ill phase. In these narrative portraits, we are drawn into the daily struggles of these families as they deal with cystic fibrosis.

Bluebond-Langner looks at how families adjust their view of what is normal over the course of the disease while balancing the needs of other family members. The book also helps us understand how non-CF children in the family view cystic fibrosis, how they relate to their chronically ill siblings and their highly stressed parents, and how families can meet their needs as well. The book appears in hardback, ISBN #0-691-02783-8.

David Orenstein recently updated his 1989 book, Cystic Fibrosis: A Guide for Patient and Family. The second edition was published by Lippincott-Raven early this year. It is an excellent companion to the book listed above. If you are not already familiar with this guide, Orenstein truly offers a thorough introduction to cystic fibrosis, its effects on the various organs of the body, management of the disease, and advances in treatments.

In his second edition, Dr. Orenstein provides a much-needed update to old material and has included several new chapters as well, including in-depth discussions of the basic CF defect, diagnosis, organ transplantation, and CF and the teenage years. He has also added a short checklist of basic information at the start of each chapter and his chapter on genetics has been completely revised to accommodate new strides in our basic understanding of the disease.

In reading, I became aware of the disparity in treatment plans from center to center across our country. For instance, Dr. Orenstein's chapter on airway clearance gives 11 pages to Postural Drainage Techniques, and only two pages to five alternative therapies. He implies that several of these other techniques are not readily available and used mostly in Europe. He completely leaves out the ThAIRapy Vest and the IntraPulmonary ventilation (I.P.V.) device (which are newer, but becoming very popular). Here in California (which is the only place that I have witnessed treatment) most people with CF that I have come into contact with use one or more of these alternatives and avoid traditional chest percussion therapy. My own son, age five, is quite adept at the Flutter, and is learning PEP. I found these alternatives readily available at my CF Center.

I also would have appreciated a more thorough listing of resources beyond just the accredited list of CF centers and the CF Foundation. While Dr. Orenstein mentions three CF newsletters for adults with CF (CFRI News was not included), he does not go into any detail about support services, CF lay person conferences (open to CF patients and their families as well as professionals), or on-line information and support. These are highly important to people with CF and their families, as they are sources of the most current medical information. For this reason, the oversight is regrettable.

Still, I strongly recommend that anyone who deals with CF, even in the most casual way, have a copy on hand for reference. It is certainly an excellent starting point. It is especially vital for parents of newly diagnosed children, teenagers growing into taking on responsibility for their own disease, and anyone needing a refresher about a certain aspect or progression of CF. It is not readily available in bookstores, but I found clerks happy to order it (the process takes about four weeks). The book appears in paperback, ISBN #0-397-51653-3.

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