"Now That I Have CF" Information for Men and Women Diagnosed as Adults
(CF General)
Palys, B., Palys J.R., Widerman, E., Solvay Pharmaceuticals, 2003
ISBN 3-00-013902-8
This books title reflects one woman's realisation that although her CF has been present from birth she had no identity as a chronically ill individual. Thus, her diagnosis became, "When I got CF"and the over twenty intervening years have been, "Now that I have CF." Her life and self view profoundly changed the evening a pediatrician stopped by her hospital bed to tell her he had found the explanation for the symptoms she had been experiencing.
Learning of CF as an adult raises important questions and presents complex challenges. At diagnosis men and women discover they have a condition about which they know little or nothing; they are different from most others with that condition; if they are male they are probably infertile; and that others in their family may be affected.
They learn they have a serious condition after already having made major life decisions (ed., career choices, having children, financial committments), many which may not be compatible with the symptoms and treatment demands of CF. They find that little is known about what they can expect as they age.
Existing patient education designed for distribution at diagnosis is largely targeted to parents or children, and the materials addressing adult issues and needs assume knowledge of and experience with CF. Neither address the unique documented and socio-demographic characteristics associated with diagnosis during the adult years.
This book has been developed to fill the gap. Its content and presentation are based on the findings of a study that surveyed over 150 aduly-diagnosed individuals from around the world to determine what they wanted to know at diagnosis as well as later.
The intent of this book is to provide:
- An overview of what is known about adult diagnosis in CF
- Guidance in perfoeming self care and maintaining optimum health
- Information to assist those understand and cope with the medical, physical and emotional challenges of CF
NOTE: This book is only for loan to our Western Australian members.
