Pattern Dystrophy—The Eyes Have It

Pattern dystrophy. It’s a strange name for an ocular condition, sounds more like a fashion accoutrement, but it’s real, and I have it.

I first learned about this rare disorder thirty years ago, while in my early forties. I noticed that edges of objects had become wavy, and letters of print were crooked, as if chunks of them were missing. I’d check it out by looking at the edge of a doorway or wall. Sure enough, there were tiny bites in the straight lines!

A disastrous diagnosis

My first diagnosis, which was given on a Friday (never a good idea), sent me spiralling.

“It’s retinitis pigmentosa“, said the specialist, “I need to be honest with you. It
leads to blindness, and no one knows how long your vision will last.”

I don’t remember how it happened, but sometimes the medical community moves with surprising speed, and before I knew it, I was in the research lab of an eye clinic connected to the University of British Columbia in Vancouver. Here, in a much large center than Victoria, I hoped that I would have a more positive diagnosis.

I spent a day staring into a white hot disk, while technicians traced the condition of my macula, the vision center of the eye.  At the end of the day, from the lips of a world renowned doctor, I heard a different diagnosis, pattern dystrophy,  so named because of a deposit of matter that settles on the macula in a pattern, in my case, a butterfly. This inherited disease develops very slowly, I was told, and seldom results in a total loss of vision.

More changes

But I noticed some changes this past month, which prompted me to make an appointment to have my vision checked earlier than usual..

I was right. There were some changes. None of them good, but none of them drastically bad—just enough to confirm that my eyes were on a steady and more rapid path of decline, and I would need new glasses once again.
On the 12 minute walk home, my eyes still blurry from eye drops, I had the usual human responses—panic, anger, worry, and a distinct feeling that my life was about to get a bit more difficult.

An informal assessment

As I walked, I did an informal assessment of sorts. Why was I upset? What had changed? What was worse, and what could I do about it?

I would have more fatigue
It takes a tremendous amount of energy for eyes to focus, and if they don’t focus well, you become tired.

I would have more discomfort
My eyes have become sore recently while I was reading and working on the computer.

I would have reduced clarity
With pattern dystrophy, eyes don’t focus well, even with glasses.

I had anxiety
I’d always thought about my eye condition as something that wouldn’t affect my life.

But what now?

There were three things I could do:

Reading glasses
I could buy prescription reading glasses (one quarter of the price of new bifocals)

Limit ‘blue light‘

I could wear special fit-over glasses in sunlight and while using the computer and watching television to protect my eyes from the blue light which causes damage.

Watch my diet
I have always included many salads in my diet, and have taken Vitalux vitamins to supplement my intake of lutein. I could eat more kale, I was told, which was rich in lutein..

Think positively
I inherited this condition from my mother, who had adequate vision her entire long life.

I was calm by the time I approached my home. It was one of those perfect, mild September days, so common in the fall in the Pacific North West. I turned my face to the sky, grateful that I could see the lazy clouds, the edges of the city buildings across the harbor. I could hear the traffic humming its way across the bridge, people walking, biking, skateboarding their way to this peaceful, beautiful city center.
Waves of gratitude spilled over me. I was already thinking ahead—what would I do with this glorious day?