My Story

When I was about three, my mother and father noticed that I could not see as others. When it was dark, I always needed a light on and would frequently bump into things when coming inside from bright sunlight.

My parents took me to an ophthalmologist who discovered dark spots on my retina, which were affecting my night vision. I then went to the University of Illinois Eye Clinic. After extensive testing, the ophthalmologist made his diagnosis: a variant form of RP. At this point, my day vision was normal, although it was not known how long that would last. I compensated for my night vision loss by telling people that I was night blind and needed to hold a hand of a fully sighted person in the evening, but I continued my life as if nothing was wrong.

As a pre-teen and teen, I went to overnight camp every summer and did everything that any other child would do. At night, my friends learned to take my hand to guide me.

When I was 17, everything changed. When I went for my annual eye evaluation, my ophthalmologist was shocked at the rapid deterioration since my last visit. My vision went from 20/30 to 20/500.

The next step was to begin a series of tests at several university research centers in the Midwest and east coast.

I was frightened. Yet, I told myself that there must be an error and that the tests wouldn't reveal anything seriously wrong. If by chance they did, my condition could be treated and my vision would improve.

It didn't happen. The diagnosis was grim. The doctors stated that, at the rate my vision had deteriorated, I would lose all my sight within five to seven years. According them, I had an incurable, aggressive form of RP, Goldman-Favre syndrome. They told me to wear sunglasses and prepare for the worst.

I was in shock and denial. But it was difficult to deny that my school work, and especially reading (a favorite pastime) would become increasingly difficult. Exhausted whenever I read for extended periods, I found myself falling asleep as I studied or read for pleasure.

Moreover, I was now faced with the possibility of reassessing my college plans. I had anticipated attending an out-of-state university, but was traveling far from home a wise decision considering what I was facing?

Throughout those bleak days - days that should have been filled with cheery anticipation of senior prom, graduation parties and graduation itself - I tried to convince myself that the doctors' diagnoses, and prognoses, were incorrect. I decided to go on with my life as if everything was normal. I flew to Tucson to begin classes at the University of Arizona, and continued on with my life.

At the end of my sophomore year I returned to see my retina specialist in Chicago. To relieve pressure in my eyes, he prescribed Diamox, a strong diuretic. The medication had terrible side effects. I was tired, nauseated, and dizzy all the time. I lost 15 pounds and was in a constant state of dehydration.

I did not care how terrible I felt because I could still see, and that was the most important thing. It was almost three years after the first dire predictions, and I could still see.

After taking the diuretic for almost two years, I received a letter stating that I should stop taking Diamox immediately. Not only was it not helping my vision, it was possibly damaging my kidneys and liver.

By the end of my junior year, I was feeling much better and pleased that I was not yet blind - and more willing to take advantage of the university's facilities for disabled students.

I decided that I would not see another doctor, at least not until more was learned about the intricacies of genetic retinal disease. Not enough was known about what I had - and so far, the doctors' dire predictions had not panned out. I was going to live my live as normally as I could, be independent and have faith in an eventual positive outcome.

I graduated from college and decided to travel. I went to Israel, where I volunteered for a four-month work-study program. I traveled throughout Israel for another three months after the program ended. I wanted to live my life to the fullest and not take anything for granted. My vision had deteriorated somewhat, but there had been no significant changes.

While traveling, I learned the importance of inner sight and spirituality. I also learned more about good nutrition and its possible role in ameliorating afflictions.

And it was in Israel that I made my ultimate career choice. While working at an Ethiopian youth village there, I discovered my passion, teaching children. I chose early childhood education because books for young children use large print and I seemed to have a natural affinity for the very young.

After returning home, I enrolled in a masters program at National Louis University and began teaching in the inner city of Chicago. I then met my future husband.

Before meeting Steven, relationships had been difficult because my future was so uncertain. It was hard to find someone who could accept the unexpected. When I told Steven about my eyes, he listened intently. I explained that I couldn't drive and that I needed help in the dark.

Steven saw it all as an opportunity to spend more time together. We have been married for seven years now and have four beautiful, healthy children.

And now, the real reason for this brief account of my journey with retinal disease: to tell how The Foundation Fighting Blindness changed my life.

About a year ago, Steve and I decided that we wanted to become involved with the foundation and do some fundraising. We met with Sue Abderholden (Foundation's Chicago office) to share some ideas. While at lunch I told her my story. She recounted the progress that had been made fairly recently, and gave me the name of a doctor in Philadelphia.

Initially, I was reluctant to pursue the matter. I had not seen an ophthalmologist in more then ten years. I was afraid that I would hear what I had always heard before - that no one knew exactly what I had, and that there was nothing that could be done.

Nevertheless, in March 2004, Steve and I flew to Philadelphia to see Dr. Samuel Jacobson. At first the visit was the same as all the others, with two full days of eye drops, examinations and pushing a lot of buttons. At the end of the two days, I had my consultation with Dr. Jacobson to review the test results. Steve and I went to Dr. Jacobson's office, and I braced myself to hear the "I'm sorry" speech once again.

But this time, it was different.

In the past few years, Dr. Jacobson had studied my condition - not RP and not Goldman-Favre syndrome. My condition, he said, was called "enhanced S-cone syndrome." It is, I learned, a genetic abnormality that begins to express itself in utero at about twelve weeks. My blue cone vision overdeveloped and my red and green vision did not.

I now know that, in all likelihood, I will never be totally blind, and that my vision will not get much worse.

For almost 15 years I had been trying to come to terms with one life, a life of eventual total blindness. Now, all has changed.

It was truly a life-altering visit. The weight of anticipating a life of darkness has been lifted.

Without the hard work of dedicated, committed researchers, such as Dr. Jacobson, his staff and many others - all funded byTheFoundation Fighting Blindness - I would have never known what I now know: my future is not dim. It is brighter than I had ever hoped it would be.

I realize that for just about everyone diagnosed with RP or a related disease, they will not be as fortunate as me and have a sudden, almost miraculous change in their diagnosis. However, people can benefit from the hard work of The Foundation and the researchers they fund. Not only are they coming closer to treatments and cures every day, they help people better understand and manage their visual conditions. The Foundation is an indispensable resource. When it comes to living with and overcoming these difficult disesases, there is no one I'd rather have on my team.