Patti

My name is Patti, I am a twenty seven year RP veteran. I was told I had a bit of an abnormal condition with my eyes and was advised to see a specialist. But I was eighteen at the time and it had no impact on me. I had no problems seeing. Although night driving, even then, was somewhat of a challenge.

RP had no negative affect on my life back then. It did not slow me down. It was not until I was in my mid twenties that the reality hit home. I went to a different eye doc and was told point blank "You have Retinitis Pigmentosa, don't plan on having any children!" I was devastated by these words.

At the time I was trying to get pregnant (I was but did not know it). Both conditions were confirmed within days of each other. A bittersweet time. lots of reflection on what was going on in my life. A few months later I gave birth to an angel we had waited nine years for. She was born premature, so things were a little hectic in our home, getting ready for this bundle of joy. At the time I worried, 'Would my child have this dreaded disease?' ' Was I wrong to have continued with the pregnancy?' Those questions have been answered a thousand times over. I was right to have had this wonderful child. She is now twenty one and there is no sign of RP. She has an exam at least once every two years and is handling it much better than I am.

Yes I fought having the 'Field Vision Tests' done. There was no treatment so why go through agonizing every year. There was no cure and I did not need to know what my eyes were doing. I would know when the time was right to make adjustments, that was my argument. I fought with the doc over it for the twenty years I was under his care. He finally just gave me the advise that he thought I should hear. I would thank him for his concern.

As a veteran of RP and now much wiser, my advice would be to have the tests done when recommended, it'll help in getting any disability benefits that you may be entitled to.

About fifteen years ago it became apparent my night vision had diminished, but I still continued to drive. One night we had car trouble out of town. I had to drive home in the dark and could only see what was in my headlights. I became quite frightened at the risk I was taking with my young daughter, sitting in the car beside me. That's when the anger at this condition began to materialize, I had no one to talk to and did not really know what was going on. At the time there were no resources in our area to help get me though this stage. I still drove in known areas. We lived in a small town so it was not a problem. Thank God I never ran over any one. I continued to drive until March of 1999, when we moved to a larger city. I realized then, it was time to stop driving. I was terrified by this.

I began searching the internet, looking for anything to do with RP. During this search I found the State Rehab department. I called and set up an appointment, several months later I started O & M training. That has changed my life dramatically. No longer am I stressed, going out among people with the white cane, but best of all, Spike has became my best friend. The more we go out together, the more confidence I gain.

I also found a support group, for people with Retinal Degenerative conditions, called 'Badeyes'. This is the best group of people I have never met. They have helped me through some very difficult times thanks BE's! Patti and Spike

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