NOAH AOC

My son is 4 (has OCA1a) and has been wearing glasses since he was 6 months old. Recently he will not wear his new glasses and says "I do not need them, I can see with my eyes". I remember reading before that some people with albinism had parents who made them wear their glasses but they really did not make a difference, so I am doing my own "poll" :)

I am curious to hear from adults and teens with albinism

What type of albinism do you have (or assume you have)?

Do you wear glasses?

Do you feel they help or improve your vision? 

48 years old, female, OCA! probably OCA!a.

Have worn glasses /contacts since I was two years old.  Finally was able to get my script in contacts at age 23 and haven't looked back!

Do they help?  Hmmm....  That is hard to explain!  I was always tole that I needed glasses, that I had to wear them all the time, and was made to put them on in the morning and take them off at night.  I was a very compliant child on almost all fronts, so I did what I was told!  I never questioned the glasses, per se.  However, by the time I was about nine or ten I started asking for glasses without the tint in them--I don't remember what color it was--it might have been an amber or pinkish tint.  Everyone insisted I needed it for the light and glare, but it didn't do a thing for me.  I finally got them to lighten it a little, but I think I was an adult before I was allowed the choice. 

Do they help?  Do I get an additional line on the eye chart with them?  No.  It is just clearer, and I can maybe tell how many letters are on the next line on a good day.  They sharpen things, maybe magnify somewhat, that is about it.  I notice that the correction seems to help my weaker eye more, but it is still weaker.  I think it has more astigmatism. 

There are days when I am not going to work or whatever that I don't wear my contacts for part or all of the day.  I don't know why.  I guess I don't really need them to do what I do around the house.  Right now, I haven't put my contacts in yet, but I am wearing my reading glasses, which are just magnification power that I usually wear over my contacts.  I would be able to read what I am writing a lot better with the contacts, but I am not really having a problem.  For long term close work, I do need the contacts and glasses.  I guess after so many years of wearing them I have become dependent on them and it is automatic.  It is when I am asked to analyze what they do for me that I see it may not be as much as some might think!

My best vision is measured at 20/200, corrected, thus, as you know, legally blind.

I do believe that for some of us, the glasses really don't help that much and the difference isn't worth the effort.  It may be that your son, at age 4, has had his vision mature enough that the glasses don't really help like they used to.  I kind of remember that feeling.  He may see that he needs them more for close work when he gets to school, he may not.

I strongly advise all parents and eye professionals to listen to their childrens 'complaints' about their eye correction, sunglasses, low vision aids, etc.  We may all have albinism in common, but we are all unique.  There is no one right answer, and any professional who tells me there is--like 'persons with albinism MUST wear sunglasses, have tinted glasses, must have an amber tint--it is the best, can't ever wear contacts, etc., I will promptly stop seeing them.  There are multiple solutions, and for some the best may well be no glasses/contacts at all.

OK, off of my soap box.  It may be that your son's glasses no longer do what they once did for him as he has learned 'how' to sse his surroundings and what things actually look like.  Vision is so much more than just our 'visual acuity'.  I would investigate further with the Dr., but I would also listen to your son, as I doubt that his not wanting to wear his glasses has any social origin at his age!

Let us know!

Joni

Hello. I have...erm...geez the type of albinism that makes you real white and legally blind. I ask my mom this all the time and she always says "full blown?" There weren't six types of albinism when I was born lol. I'm 25.

I do wear glasses. i've been wearing them since I was 1 1/2. My vision without glasses is 20/400, with them it is 20/200. Without glasses I would fall down stairs, walk into walls, and be able to see practically nothing. I actually wear contacts now, and they are soooo much better than glasses. I do try and avoid wearing my glasses now over my contacts...so much so that they are three prescriptions back from what my contacts are now.

So yes, they do help my vision greatly, but will never make it perfect. I take what I can tough. When I got my istigmatism contacts last fall i could read two more lines down on the blind kids eye chart....there were celebrations in the drs office and i sweari cried. :)

~Megs 

Thanks for all the great feedbcak so far, WIth my son I really do not notice (and never have) any hugh difference when he is wearing or not wearing his glasses

Kira,

I assume I either have OCA 1B or OCA2. Yes, I wear glasses. No, I don’t feel that they’ve made a difference in the last ten or fifteen years or so but I just wore them out of habit. Now, keep in mind that in the early 1980’s when I was born and diagnosed the doctors didn’t believe in early diagnosis and treatment. I didn’t get diagnosed until I was three years old. The only surgery I’ve ever had was to correct the strabismus and that happened when I was four years old. I believe it would have been the Anderson Kesinbomb surgery that I had

Kyle also had the Tenotomy Surgery done with Dr. Hertle correct? When was the last time Kyle got his vision rechecked? Because his vision could be getting better now that he’s almost two and half years post surgery. And, that might explain why he doesn’t wear his glasses.

Not as much when I was younger but more recently when I been in my college classes or studying I would take my glasses off while doing both those things. I think that was because when I went the Optmetrist two years ago she had said that my prescription had changed a little bit. And, she decided with my help to make the glasses Bifocal. Which I now know was a mistake because I had bifocals when I was younger and the Bifocals didn't work.  Ironically, I just went to the Ophthamolgist two weeks on Tuesday and he suspetious of Glaucoma. Also, I do have a family history of Glaucoma. He didn't think the prescription had changed enough to be changed which I was happy about.

I also have some asigmatism and nearsightedness. I don't what my prescription is. But, when I go to see the low optometry I'll ask get get a copy of  it becasue I want to know what it is. 

Jessica, he was checked and give a new perscription after surgery (6 month follow up) and this is another regular checkup with a local doctor, not doctor Hertle

I do not wear my glasses I have some just don't wear them..  I can not tell a big difference when I wear glasses.  They hurt my nose and ears and since they don't make a big difference in my opinion I did not get enough of a benefit to wearing them. 

 I don't wear glasses because the've never made any noticable difference in my vision.

Teresa,

Sometimes the the nosepieces have rubber  on them so that the plastic or whatever the nosepieces our made of won't cut into the skin on the nose. If If you have a sighted person around you can have them check it out or you can also just use a finger feel and see if the rubber is wearing off. The other thing to is maybe the nosepieces just need to be adjusted a little bit more so they are more comfortable to wear.

Shawn,

Do you at least wear sunglasses if you are extremely photophobic? 

I'm 40 yrs old with OCA1a

I've worn glasses on and off since I was 18 months old.

The glasses in my early years were heavy because they were made of real glass but over the years they got lighter as they developed new technologies for lighter lenses. I use the lightest lenses possible for my perscription even though they cost more I think It's worth it.

I've worn contacts on and off as well, but now I'm too lazy to fiddle with them anymore so I don't bother with them.

I currently have 4 pairs of glasses. 1 pair for all the time, 1 stronger pair for computer work and 2 pairs of bifocals for reading novels etc...(1 upstairs, 1 downstairs).

Do I think they help? For me, yes; they make things clearer as they help with the refractive errors, astigmatism and far-sightedness in my case, especially the computer glasses and the bifocals; I don't have to use my magnifyer or large print as much.

Although I have worn tinted glasses in the past a few times, I preffer untinted ones now and wear fitover sunglasses outside.

In my case I am near sighted and have a astygmus so I just keep things closer to me and I see just fine.  I am right on the border of legally blind so my sight may be better than most.  As far as the distance the glasses make very little difference in my seeing so it is not worth it to me to wear them.  They are more of a hastle and pain than a help to me.  The only glasses I wear are my driving glasses with the bioptic on them, they are tinted for driving to help with glare.The bioptic of course for the distance.

My sons are both farsighted - their glasses just make things 'bigger' - in their words - as they act like a magnifier. As you know they don't "correct' vision just the near or farsightedness that your child may have.

Hello,

 I have AROA (autosomal recessive ocular albinism)  and wore glasses when I was younger, beginning probably around age 3 up until age 10.  I stopped wearing them after realizing they did not help me see any better.  They were only beneficial in keeping my eyes centered.  I have found that a pair of reading glasses helps when trying to see small text up close.  Hope this helps. 

 Brett

 Brett,

When I was also diagnosed in the early  1980's they diagnosed me with Autosomal Recessive Ocular Albinism. This term is no longer being used they believe that it is a form of OCA. It would either be OCA 1B or OCA 2.  Because if yiou are a female there is no way that you could have OA. I now believe that I have either OCA 1B or OCA 2. I've not had genetic testing done yet to confirm my suspections checked out.  I also do tan. It won't change how I deal with it. It will just be interesting to know. I just recently stopped wearing my regular glasses. I will still wear my sun glasses though.

http://www.albinism.org/publications/what_is_albinism.html