How to Survive Losing Vision: Managing and Overcoming Progressive Blindness Because of Retinal Disease (Paperback) (ISBN-13: 9781456748012)

This is the story of one woman's courageous struggle against the relentless encroachment of darkness. Helen Harris, after a childhood marked by unplanned clumsiness, skinned knees, and being known as the class klutz, discovered she was a victim of retinitis pigmentosa (RP), a disease causing progressive blindness and having no known cure. Devastated by this prognosis of ever-growing darkness, this brave and stoic young girl determined nonetheless to make the most of her future.

She was galvanized to furious activity, driven by anger at the abysmal absence of knowledge of RP in the medical community and, in fact, this world. But what could one woman do? Plenty. For someone with no experience in business, public relations, volunteerism, or recruitment, Helen Harris undertook to master them all. One lone woman with the mission to move the mountains of ignorance about a disease even Helen had never heard about, all the while trying to cope with the ever-growing darkness surrounding her and her sons. She came to know that RP was one of a family of related genetic diseases, one more terrifying than the other. These diseases, being of genetic origin, often strike multiple siblings in a family.

This book will lead you through Helen's amazing success in recruiting celebrities to their cause and shedding light into the darkness of RP, involving the medical world in the fight, and garnering support from the political world up to and including a president of the United States. Information on all the new technology that has been developed since Helen's journey began are enclosed within the pages of the book.