In my research about retinopathy of prematurity, also known as retrolental fibroplasia and commonly explained to patients as blindness caused by receiving too much oxygen as an infant, I have found very little information available to suit the needs of patients and families who are desperate to learn what the condition is and how it affects their lives. It is for this reason that I have decided to write the book described on this page.
The book is tentatively to be called Weathering the Storm: Living with Retinopathy of Prematurity and will be designed to meet the needs of patients and professionals alike and, though content may overlap to some degree with that of other publications, will address the specific needs of people affected by RLF/ROP and their families. The book will combine information gained from personal experiences and professional literature to present a thorough picture of the experience of living with RLF/ROP throughout the life span and to provide information which will assist people who have RLF/ROP and their families in obtaining appropriate medical care and support services.
An overview of topics to be covered in the book is presented below.
I have designed a number of questionnaires which will be used to receive input from potential readers. These will be placed on this site shortly and will be able to be filled out on the Web.