NOAH AOC

Well, I'm 20 years old and only recently started researching my ocular albinism.  I always knew that I was albino, but never understood much about it and why my eyes "shake" because nobody really bothered to explain it to me.  I drive with a binocular aid so life is pretty much normal, although I'm very self conscious about my eyes.   Currently at work I am involved with a lot of random customers who understandingly give me weird glances when I look up at them.  I know that its probably far fetched but I was reading about a surgery to stabilize the eye muscles so that the nystigmus wouldn't be as bad.  I'm wondering if anyone has had any experience with this.  My vision is best when my head is facing down and I look through the top of my eyes.

 Also - I have been tanning at a salon with my friends.  I have always been told to wear sunscreen and sunglasses, but I never understood why since I have always been able to get a little tan.  I had a friend in High School who had a more obvious form of albinism.  It was harder for him because his whole family was black, and he had very fair skin and reddish hair.  He always had to wear sunscreen anywhere he went because he would burn but I only need it if I'm going to be outside all day.  Since my hair is dark blond and I actually get pretty tan in a tanning bed I'm wondering if it's still something I should completely avoid because I definitely don't want skin cancer or skin damage. 

 I'm sorry if this seems drawn out or if these are stupid questions but I am really confused.
 

The surgery for nystagmus you are talking about is called the Tenotomy. My son who is 3 had the surgery with much success in Oct 2006 when he was 2.5

It did help slow or stop at times his nystagmus and also improve his acuity and depth perception. We were thrilled with the results of the surgery but it must be done in conjunction with a nystagmus reading and a doctor who is experienced in peroforming the surgery.

 I am in th exact same boat as you, only my hair is light blond (parents are Scandinavian and OA means lighter shade of hair :( ).  I begged for an OA forum a while ago but there was no push for it, so lucky I happened by today :).

What is your vision at currently unaided and with glasses?  I'm sitting at 20/70 in one eye and 20/80 in the other uncorrected, with glasses 20/40 to 20/50 in both and with contacts 20/30 to 20/40 in both.  Have you ever considered contacts?  I am just like you, super self conscious about my eyes so my general tactic had always been look at someone for two seconds, ground, back for two, back to keep focus so they don't shake.  Now that I'm using contacts I look at someone directly, unless I am completely tired or only using one eye, my eyes do not shake at all, anymore period. 

 I actually just meet an eye doctor that told me exactly why we need to wear sun glasses and it makes perfect sense to me.  The worry is not that the sun is damaging your eyes instantly or lowering your vision over time, it is your skins reaction to it.  What you do not want happening is the formation of moles on your retina.  For us it would be pretty much game over on any chance of decent vision if we needed surgery to remove a mole on our retina :(

 I will tell you one of my major tips for keeping my eyes from shaking.  Your eyes get tired extremely fast in bright areas and DRY.  I don't know if it is true for most people with OA, but my eye doctor said I have dry eye pretty bad.  Between using contacts and always keeping eye drops in my eye the shakes are virtually gone.  Try it out yourself, go out on a windy day or when its bright as your eyes get dry they will shake much worse!

I can tell you right now the worst thing for me to do is spend a day out in the boat without having eye drops or sun glasses, couple minutes in and I can barely keep my eyes open!  I have been rambling but those things relate right back to daily life.  If your eyes are tired (dry, no sleep) they will shake much worse.  If you struggle with focusing, they will shake much worse as well.   

 Maybe you could answer a question for me, is there any poor mans binocular setup for driving?  Even though there is a gradual shift in the country to signs bigger than 20/40, a lot of places still use 20/30 signs and smaller (for how far back you should be able to read them to make a turn decision).  Maybe something not so obvious, I wouldn't want people to see me using it.  I'm self-conscious.
 

 PS, if anyone is like me and you don't notice your eyes shaking, here is the way to see it and maybe get a feel for it so you know when to shift focus.

 
In a dark room use one eye and look at a small light that you can focus on.  After three seconds of being steady that light will be bouncing very fast back and fourth.  Trust me it's not moving, you just experienced what other people see your eyes doing :)

 I have used this to train my eyes pretty well for when I'm not wearing contacts.  I've done it enough to know the feeling my eyes give when they are ready to shake.  By shifting focus, that's when I will look away from the person and refocus for a few seconds until I start to feel the strain building up.

 Hope that helps some people socially, I know at times I wanted to rip my eyes out!  God I hate it!

Andrew, do you have Ocular Albinism or OCA? If you only have OA, then it is not uncommon that you can tan. Both of my sons have Ocular Albinism, my oldest son is fairer, but my youngest gets quite tan (downright dark)

Just an fyi - my oldest found that the gas permiable (rigid or hard) contact lenses really helped slow his nystagmus. The soft lenses don't have the same effect.

I've been of the boards a while but I'm really looking into contacts.  What is the difference between OA and OCA?  I'm actually tan as we speak lol so I guess it would have to be the one that would allow that.  Thanks for the info on the contacts... did they help improve his vision at all?  Are they hard to put in and take out?  Do you do this daily?  and exactly what kind are they?  sorry for all the questions but your one of the only people I've found who has any experience.  Thank you SO much! 

Any idea where to find one in the Dallas, TX area?  or should I start looking for plane tickets :) 

 Actually they are usually free!  If you find your local "Department of Rehabilitative Services" or a state "Commission for the Blind" you can have a meeting with them and they will help you make a plan for life and PAY for you to go to doctors to pick out stuff that could help you like magnifiers and such... but they also will pay for the driving aid and that doctors appointment.  They come in all different shapes, sizes, and colors just make sure you get a note that you're supposed to wear them from your doctor or the DMV will test you without them on :)

Hi Andrew!

The difference between OA (Ocular Albinism) and OCA is that OA only affects the eyes (not the skin and hair). From what you've said, I would suspect have OA. OCA is referred to as having albinism.

I don't know where you live, but I'd see if you could find a Low vision specialist. They are great at fitting contacts on people w/ low vision and nystagmus. AND they must fit just right. The "hard" lenses -or gas permiable rigid lenses did make a huge difference for my son. His nystagmus slowed down considerably and he got about another line on the eye chart. You do put them in every day. They take some getting used to. The first three weeks or so are not easy - but you only wear them a few hours at a time, then increase your time. The older you are, the easier it is - as you have the skills to tell yourself how to get through it etc. My son tried them for the first time at 11. That didn't last.

Many people who wear contacts do wear "hard" lenses for one reason or another. The 'newer' lenses of course are the soft and/or disposable but for some reason they don't have the same effect. I think it's the weight of the hard lenses.

Tanning beds- except for the normal precautions that everyone else should take - if you have just OA, there is no reason why you couldn't use one. Just protect your eyes (as everyone should)

Good Luck to you!!