Living with Retinitis Pigmentosa

At the age of 12, during a routine eye exam at my school the Nurse noticed that something wasn’t quite right with my vision. At the advice of our family doctor I was taken to see an Ophthalmologist and at that time was diagnosed with Macular Degeneration and told I was legally blind.

I just assumed at the age of 12 that surgery would fix the problem and life would go on as usual. Not so as there was no surgery at that time that involved the retina. Several years later the diagnosis was change to Retinitis Pigmentosa

What Is Retinitis Pigmentosa (RP)?

Retinitis Pigmentosa (RP) is the name given to a group of hereditary retinal diseases characterized by progressive loss of visual field, night blindness
And reduced or absent electroretinogram (ERG test) recording, which indicates that a large portion of the retina is damaged.

Parents can have both affected and unaffected children. In recessive RP, there is often no prior family history. In families with the autosomal dominant
RP, an affected parent can have both affected and unaffected children. In families with the X-linked type, only males are affected, while females carry
The genetic trait but do not experience serious vision loss.

The symptoms include âÂ?¢ Normal visual acuity in early stages, possibly – but not usually – progressing to no light perception

� Donut shaped visual field loss progressing to severe constriction (loss of peripheral vision)
� Night blindness
� Decreased response to magnification
� Need for more light

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Now that you know what it is I’ll do my best to explain how I cope with RP on a daily basis.

Of course one gets depressed once in a while being unable to do things at the same pace or in the same way is discouraging to say the least . There is also a sense of accomplishment when you learn a new task or new way to complete a task that you thought was impossible.

At the age of 25 I learned to use a white cane for travel and although it got the job done I wasn’t really fond of it. I attended Pilot Dogs Inc. in 1995 and learned to work with Shelli a beautiful German shepherd which gave me the feeling of independence I had been seeking.

I took correspondence classes in Braille reading and Writing at the Hadley School for the Blind in Winnetka Illinois and was chosen Braille student of the year in 1996.

Over the years as my vision has decreased I have learned to be patient with myself when learning new tasks such as knitting and learning to operate a computer. Most problems that are encountered as a result of low vision can be solved with either the use of a specially adapted device or something as simple as placing a rug at the bottom of the stairs in order to determine your location.

I do get frustrated sometimes when people automatically assume that I can’t do something just because I have a visual impairment, but for the most part I have a very satisfying life. I am the extremely proud parent of a College Student and have a great job as the secretary of People First of Ohio. I do volunteer work and hate doing taxes. I love to cook but hate to do dishes. I knit crochet and read avidly, in other words I’m like the rest of the population.

Although most people see blindness as a horrible frightening thing, it is merely part of my life and I refuse to let it turn me into a bitter unhappy person. There are too many things I want to do
In life to spend time wallowing in despair. Now that I’ve said that yep once in a while I do get depressed but doesn’t everyone? doesn’t everyone?

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