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Blind and Visually Impaired Community

Full History - 2018 - 06 - 03 - ID#8obq49
3
Do I have ocular albinism? (self.Blind)
submitted by martinerous
Hello.

I'm 38 years old man. Since birth I've been diagnosed with a set of the following symptoms:
poor eyesight (short-sightedness), astigmatism, horizontal nystagmus

I also have photophobia (need sunglasses often, especially when being nervous) and sometimes I'm squinting.

I can read books, use cellphones and actually I've been working as a software engineer for last 10 years. But I have to put my face close to the items I read or use a magnifying glass.

I had suspicions that my symptoms might be somehow related and caused by some root condition but I had no idea how and whom to ask about it. There was no Internet when I was growing up and I come from a small Eastern European country where medicine has been out-of-sync with the rest of the world for many years.

Only recently I discovered the conditions called ocular albinism and optic nerve hypoplasia.

I understand that knowing about the root cause won't help me much, but at least I would like to have some "label" to assign to myself, to find people with similar conditions.

I'm curious, are there any very specific features of an eye that can be immediately associated with ocular albinism to determine that I for sure have it, or on the contrary - to be sure that I don't have it and my issues have some different root cause?

So, I'm adding links to photos of my eye. I took them at different lighting conditions, but I'm not sure if that will be enough:

https://i.imgur.com/Rpu0RgT.png
https://i.imgur.com/9VBdMnb.png
https://i.imgur.com/EyvNdUV.png

Additional info about my general health.
I think I'm not albino. I've been blond most of my life with almost invisible eyebrows. My skin is pale, but still I can get some suntan, although not brown; more like bronze. But during last 15 years my hair has turned from blond to something like hay. I have some hair on my arms and also some beard, and that is also hay-color, darker than my hair. My elder brother also has similar colored hair and body hair, but he has no problems to get brown suntan.

Also, I've had some physical development problems, I'm thin and somewhat underweight, when compared to my physically strong and healthy elder brother. In childhood it was really bad, but at my teenage years I grew taller and now am 173cm and weigh 50kg. Although I have somewhat slowed-down mental processes, that might be because I'm an introvert and not because some mental development issues. But still it might be related.

I often feel that my eye nystagmus displays my inner neural sensitivity. I'm too sensitive. My hands are often shaking at even slight stress and I have to strain myself to keep them steady, I have very vivid dreams all night long and I have to sleep at least 10 hours to feel good and avoid bags under my eyes. So, it all might be related, but I just don't know how exactly and it would be nice to find out, if possible.

Thanks for any ideas.
jrs12 6 points 5y ago
An ophthalmologist would be able to answer these questions for you in their office. They have to use a machine to actually look in your eye instead of just at what we can see from a picture. They may want you to follow up with a gentics specialist to get further confirmation if they have any concerns. If i were you I would also visit your family doctor to discuss your other concerns and, if needed, a therapist or psychologist to manage your anxiety. Good luck. It sounds as though you have done your research and are taking steps to take care of yourself.
pokersnek 1 points 5y ago
Does your hair color resemble your family’s hair color? Besides your brother, does anyone else in your family line have blonde hair?
martinerous [OP] 1 points 5y ago
My mom had blonde hair, but with time it turned really dark, much darker than mine. My dad always had dark hair.
pokersnek 1 points 5y ago
You probably don’t have ocular albinism. People who have it tend to have very sensitive skin and will burn instead of tan. It may be a coincidence that you have nystagmus.
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