This Is the Book I Needed
With this book, I hope to give the gifts of hope and freedom gained from my own long journey, to the millions of people who have lost eyesight because of retinal degenerative diseases, and to those who love and care for them.
This is the book I wish I had forty years ago as I progressively lost my vision. It took a long time, back then, for doctors to even diagnose why my field of vision was shrinking. Even then, they could not give me a reliable prognosis other than telling me that my loss of eyesight would be irreversible.
I suffer from retinitis pigmentosa (RP). RP really is a group of genetic eye disorders. Rarely diagnosed properly at the onset, RP can start in childhood—as it did with me—with night blindness, then, later, loss of peripheral eyesight, and finally blindness itself. This loss can take years or even decades. Many people may not become legally blind until they reach their forties, but others lose their sight dramatically faster. Progression can differ widely from one individual to another.
Even as my field of vision narrowed, I could still read eye charts in front of me and those through an optometrist’s viewer. During the same time I became legally blind, I still registered as having 20/20 vision!
RP is one of several types of degenerative retinal disorders that afflict tens of millions of Americans, with new cases diagnosed every day. These types include macular degeneration and diabetic retinopathy.
When I was diagnosed, there were virtually no resources and very little information available to help me learn about my illness or what to do about it. Times have changed. I’m proud to say that the foundation I established, RP, played a role with other fine organizations in raising public awareness about retinal degenerative conditions.
Medical science has made strides in understanding and diagnosing these incurable vision-impairing and blinding degenerative retinal disorders affecting tens of millions every day. The search continues to find safe and effective treatments; however, no one can predict accurately when such treatments might be discovered to slow, halt, or reverse vision loss among those afflicted. But cellular and bionic implant research has shown much promise recently.
Nevertheless, we still have a long way to go. We also still lack public information. This is particularly true when it comes to helping those with vision disorders to cope with the very real and daily emotional, social, and physical challenges of living with low vision and loss of eyesight.
Over the years I have shared my experiences and offered information and support to hundreds of fellow sufferers from retinal diseases, as well as providing support for their health care providers, caregivers, and loved ones who have asked my advice by phone, email, or in person. With this book I hope to reach all of them and many, many more.
Most of all, I want to get people to think differently about these diseases. I want people not to think of these diseases solely as tragedies, but as conditions that people can learn to manage and compensate for, and even overcome. In these pages, I will show how sufferers of retinal degenerative diseases can take positive steps to cope successfully with vision impairment and regain control of their lives.