NOAH AOC

My son, Reece wears glasses to watch TV and to do his homework. He is 8 years old, the Ophthalmologist said that people with Albinism cannot get corrected lenses, they can only have glasses with magnification. Is this true? He's been wearing glasses since he was 2. I assumed they were to correct his vision, not to make things bigger. Can somebody advice? I would appreciate any information. Thank you,

Kathy Peterson

sorry I"m no help my Jacob is also 8 and only wears glasses to read. Our PO said that glasses wouldn't help him any 

A strange response from your doctor.  Eye lenses vary in accuracy, measuring that accuracy and correcting it is independent of the retinal problems endemic to albinism.  Yes, the retina has low visual acuity, but why not give it the best image it can work with by correcting any lens problems?  By 8, I assume your child could tell whether he thought they helped, but it's certainly feasible that they would. 

Kathy,

The Ophthalmologist is correct that the glasses don't correct the Albinism. However, the reason the eye doctor gave him the glasses to correct the refractive errors that your son has. That is a true statement that you can get glasses with magnification in them. I own Bifocals that are that way.

I just found out people with albinism have a high astigmatism, don't mind spelling. I thought the glasses help that as well. My andrew is getting glasses soon. I think he is a +3.50, -2.50. Don't know the axis yet. He is getting the script soon. My husband compared Andy's sight to an older digital camera. It has alot less pixels then todays camera. Less pixels, less accuity. His vision is grainy. Glasses can not really fix it, can help a little, but not fix it.  It makes me very sad to hear that. But, it could be worse. MyAndy is a happy boy with great functional vision. His vision now is 20/400.

Jill

Jill,

I've heard the digital camera explanation before also.  It helped me to understand the way Ryker is seeing but I still have trouble understanding how glasses will help his vision.  It's all so confusing!  He also has astigmatism and is being watched for his farsightedness. We think his vision is about 20/260 which makes me sad  but he really does do considerably well!

Kelli

Hi Kelli...

I think we are actually lucky, our kids vision is pretty good now compared to most adults with albinism. At the different NOAH events I hear the adults talking, a lot of them say their vison is 20/200 or worse. Our kids have that now and I think, now I could be wrong, but I think their vison continues to get better until they are about 5 or 6. Even if it is better than what it is now, that is pretty good. i don't know how the glasses will help either, i kinda just go with it. My husband knows more than I do. Speaking of, here I thought my hubby made that up about the camera thing, hummm not as smart as i thought he was, lol!

Are you bringing your son to the conference? I have a chance to go, now I have the same problem, lol!

The digital camera descripton is a good one, but I beg to differ on one point!  I don't know if 'grainy' is the right description.  Things don't look grainy to me!  I guess a more accurate description for me than grainy would be lack of fine details.  For instance, I can see if you are wearing a name tag or badge, but unless I invaded your personal space, i could NEVER tell what it said!  I dan telkl you have two eyes, and usually whether or not you are wearing glasses, that depends on the distance and whether they have really thin frames. Again, I couldn't tell your eye color unless we were practically nose to nose.  I can tell there are people in cars driving by, but I could never tell you who!  I can see there are pictures and even words and prices on the menus at McDonalds, but without a monocular, I can't read exactly what they say.  When my daughter walks home from school, I can tell who she is from about half a block away only by things like her height, her bright blue (used to have a bright pink) backpack, and the fact that she is usually carrying from one to three musical instruments!  I can't really 'see' that it is her until she is much closer, from half a block it is a general 'outline and color' thing.  Writing on people's shirts is the same--if it is something huge--only a couple of words or a logo, I can read it from an acceptable distance, small or just a chest logo--forget about it!

It is like the difference between a pic taken with a really good digital camera and the same pic in your newspaper.  You lose the details.  While I agree that newspaper pics look 'grainy' sometimes, even fro me, my vision isn't grainy.

For the record, I wear contacts, I am farsighted and have astigmatism also.  I think the contacts are a +8 and a +7.5.  My better eye is 20/200 corrected, the other slightly worse.  Now, what do these lovely contacts do for me?  Hmmm...make things sharper and I guess a little bigger.  I would be hard pressed to read without them more than a little due to the facial contortions I need to perform to focus!  I can see to get around without them, but they do improve my vision enough that I wear them pretty much all of my waking hours--and some days that is a lot.  I can't say the differen is like with my near sighted daughter who has horrible vision without her glasses but perfect with.  What I notice is that my contacts seem to help me mentally stay focused on what I see.  I know that may sound wierd. 

I also use reading glasses over my contacts--they are a +12--nice Coke bottle lenses.  I use these for longer periods of reading, as oppposed to my magnifying glass which is the same strength which I use for checking things out.  I use the glasses on the computer also, now that my free trial of ZoomText is expired--waah!  Love that program, it is just expensive and as I don't need it for school or work will need to pay for it myself.  As parents, though, you know what you want comes after your kids!

Sorry this got a little long.  I am kind of hyped up this morning--leaving for Florida this afternoon to visit my middle daughter--and it is snowing here!! 

Happy Easter!

Joni

Joni, Thanks for the explanation of how you see.  It did help me understand some more of how Ryker might be seeing things.  He gets really close to something he's never seen before and then after that doesn't seem to get as close (expcept for books, which nose is right in them!).  I love reading your posts and hearing from your life experiences as a person with albinism.

Jill, We are still planning on going to the conference but have decided to leave our children at home.   We want to attend everything and not worry about our kids.  And also take in some night life without children for once!  I know we will bring Ryker when he's a little older so he can form friendships with Andrew and everyone else's children on this board!  Won't that be awesome for them as they grow!

Kelli

I agree Kelli. Now, it is funny, I want to go and don't want to bring Andy on that long plane ride and worry about him there. Now, my husband tells me tonight, he wants us ALL to go (AHHHHHHHHH), lol. So, now, I have to look at the daycare stuff and wonder if they can watch my 3 year old w/out albinism. I think it is great to go as a family. But, I wanted to learn stuff without worrying if my 3 year old is hitting another child or if Andrew is taking a nap, lol If we go, it should be interesting, lol! Maybe we should just stay at Circus Circus, hee hee. I can't wait to meet everyone!!!! Good news, Andrew's eyes are actually 20/380, hey anything helps. We letter the letter from the PO today!

Happy Easter!!!

Jill