Skip to main content

How do I see?

It's probably one of the most common questions people with albinism get. The trouble is, how would you (if you're a person with normal vision) describe how you see? I have nothing to compare with to explain my vision. Once, I was told that our lack of being able to see detail was like looking at the world through a 1950s TV (without the black and white). People with normal vision have the latest and greatest high definition TVs. It sort of makes sense. 

Parents often comment about how amazed they are that their child saw one thing, but not another. I can't explain it except to say there are tricks of the trade that you just learn over time. For example, if something drops (like a toy) I might hear it, and thus know where to look. It might appear I saw it when I didn't. I've been known to find booboos in knitting and cross stitch that surprise people. The trick, I always look for patterns. I do it and I don't even realize it. I might not be able to see the small detail, but I might be able to see that the overall pattern is off. 

Recently, a friend of mine from Australia (we know each other from the Internet) made a video to explain her vision. She notes, as will I, that not everyone with albinism sees the same way or has the same problems to the same degree. My own brother and I are a perfect example. He is able to use bioptics when he watches TV. My nystagmus is worse. When I've tried bioptics, the far away image sort of floats by my vision. I'm unable to control when or how it does it. Not terribly useful for me! Grin! Here it comes and there it goes....

Several years ago I saw another such video made by two other people that have albinism. Honestly, they must see better than I do because several things they pointed out as not an issue for someone with albinism are very much an issue for me. 

Thus, this won't speak to everyone's experience, but it's the best explanation I've seen to explain my vision, why I choose to use a cane (especially outside) etc. 

You can find it at: http://www.youtube.com/watch?v=RrqdFKs2Hzw

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect