NOAH AOC

At 46, I guess I have a little bit of sun experience!!

Anyways, I lived in So.Cal.--Fullerton and Yorba Linda--from 1983 to 1993. I grew up in Wisconsin and returned to Wisconsin--not because of the sun, but for the snow!! Really, I moved back mostly because of family and work choices. Which should be your only reason for moving, not the sun!!

I agree that the sun is different in different locations. I just returned from a trip to see my almost 91 year old grandma in nebraska. Now that is some bright sun!! Of course, nothing in the way to block or alter it, just lots and lots of corn!

I am with the others on sunburns--mine have all been due to arelessness and stupidity on my part. I haven't had a serious burn in many years, but i do manage to get one sunburn a year due to stupidity--like getting burned on cloudy days or while under a shady tree--yep, I know it will happen, but I always get careless in those situations. However, I can go to a waterpark from open to close in mid July in bright sunlight and not even turn pink! Hat, sunblock and a Tshirt over the swimsuit were the answer!

I also don't wear sumblock everyday. I wear it when I am going to be spending time outside, but not just to go to and from work--walking four blocks each way to the bus, or for running errands. When I am doing outdoor activiies--hiking, biking, camping, whatever, I prefer hats to sunglasses, although I do own a pair, and use them when I need to. I had a major aversion to them as a child, and still have problems with them causing my vision to be worse, but that's just me.

There are loads of pictures of me as a kid in which I am looking down when outside, it is just a natural reaction to the brightness. I don't remember the sunlight actually being painful, even now it rarely is--only when I am riding in a car directly into the sunset, etc.

I love the water, and that is an issue with the sun. Some of the danger areas on the body that tend to get burned=, due to reflection from the water, are the eyelids, under your nose, under your chin, under your ears, the backs of your legs/knees when you are in a boat--especially a nice silver canoe--etc. Ears in general if you don't wear a hat with a brimall the way around and forget the sunblock.

I, too, know how much sun is enough. I can't tell you a precise number, because it varies by location and activity. It's just something you learn with experience, just like as a mom you soon learn to tell if your child has a fever and whether it is high enough to worry about without ever getting out a thermometer.

My advice would be to enjoy all the activities you always have done, but take it in smaller doses at first and experiment with different hats, sunglasses and sunblocks until you find the combination that works and can judge when he has had enough. Soon enough, your kid will be able to tell you!

Joni

Thank you all for your replies. I really appreciate hearing from your pwn personal experiences that with the proper precautions he can enjoy the great outdoors. I was worried that even with the sunglasses and hat the sun would be too uncomfortable for his eyes. I am glad to hear that is not the case.
Katie, 2 questions: What's up with your screan name Bull_riding_freak? I am a mom so i have to ask and 2 how difficult or I should say easy is it for you to play soccer in the sun and see the ball? You must have less photophobia and better vision?? It sounds like you love it.

Thank you all again,
Marie

Hi Cooper's mom!

I've lived in sunny areas all of my 40-something life! Mostly in Oklahoma and Texas. I've loved the water since I was young but I've only had a few bad burns. Everyone has given you great suggestions so I only have a couple of others since I may be the only "fish" who has answered.

I love the beach and the water! I usually go in the mornings or evenings when the sun is not so intense. My mom used to make us take naps in the heat of the afternoon. I hated it at the time, but I've never had any skin cancers so she did a great job of keeping me safe!

When he gets a bit older, you might consider neopreen rather than a swimsuit for him. I learned about neopreen when I learned to SCUBA dive. My suit has long sleeves but is really comfortable in the water - much better than a t-shirt! Besides, neopreen comes in cool colors!

Have fun and write often!
Rita

With Love and Bright Blessings

Well all i can say as in being 14 and not having alot of expeirice you can take my advice if u want but if u dont want to take advice from some "outa lescent teenager" then that ok but here i go:

for question 1

Im pretty sure you can let him out in the sun so long as he has sunscreen on (I dont like sunscreen so i end up burnt really bad DO NOT LET THIS HAPPEN TO HIM IT HURTS ='[) he shoud be fine just make sure it has a very high spf rating on it.

for question 2

I LOVE THE BEACH!!! My family has a boat so we go all the time. Just make sure that you bring suncreen. I use a uv shield shirt (longsleave) it can really help at this age since all you have to do is stick that on. Also get him some shorts to where that have a tieable elastic on the bottom. this way he does not begin to hate putting on sunscreen like i do.

For question 3

There is no reason why you should move just make sure he has sunscreen on when he is outside a hat and sunglasses, I have transistion glasses so i do not have to worry about sun glasses these are worth there weight in gold so as long as you do these things you should not have to move.

For question 4

you bet it is ok just make sure you have the things above and he will be fine.

For question 5

well no sun is good my feet are still burnt from no sunscreen form june *ouch*. MAKE SURE HE HAS SUNSCREEN ON!!!

For question 6

Contact me at "terriemc777@msn.com" if you need any advice and im sure my mom would gladly give you some to if she wants.
Make the subject "albinism help" so i know its you.

Hello!

1) When my parents take my little brother and i to the lake or pool we have to apply sunscreen at least a half an hour early so that it has time to soak in. Then we can swim for about 2 hours before getting out or re-applying sunscreen and then waiting again.

2) I love the beach.  I don't think it's nessesary to bring long sleeved clothing! he should be able to wear his swim trunks--bathing suit.  You can also go to certain outdoor sports store/surf store and get him a rash guard.  That's just what the surfers wear it's made from bathing suit material and and it has long sleeves but it's not hot. Also bring and unbrella, sunscreeen, sunglasses, hat and that's prety much all.

3) NO No NO don't move just make sure he is protected rom the sun...put sunscreen on him daily and keep him in the shade unless you're at a pool or beach.

4) Yes hiking outside is ok. just make sure he's got lots of sunscreen on, a hat, adn sunglasses and it's fine.

5) The sun is enough after about 2-4 hours as long as he has lots of sunscreen on and you continue to re apply it he can be out for a while but not all day like others can.

6) Dont treat him "special" you don't want to make him feel bad about himself you just want to make sure he has what he needs as far a vision tools and sun protection. other than that stuff treat him as if he was a child without albinism. I know that i don't like to be treated special i just like to know that i have what i need for my vision adn for sun protection other than that i like to be treated completely normal, like my friends

i hope i helped you a little!

~caleah

 

 Hi Ali,

I do have a question for you and i was hoping you can help. I am also a new parent of a 10 month old baby girl. My question is regarding the photophobia. My daughter is extremely sensitive to the sun. She will not open her eyes at all outside at all on a sunny day, not even with her sunglasses. On a cloudy day she's able to keep her head up with her sunglasses only, otherwise she buries her head in my chest.  Does the sunlight hurt her eyes or is it just an uncomfortable feeling?I'm afraid that everytime i take her outside im hurting her. She does'nt cry or anything but she covers her eyes with her little hands. By the way. we are also from Southern California. We live in LA and I actually go to school in Orange County.

 

Nevaehsmom:

Welcome to NOAH and congratulations on your baby girl!  I understand your sun concerns.  My son Zachary is 4 and has albinism.  When he was young like your daughter, he wore Babybanz sunglasses that wrapped around his head.  Regular kid's sunglasses let light in through the sides.  He also wore a floppy hat outside.  Have you tried your daugher in a hat?  I don't know if she'll wear one if she hasn't been used to wearing one, but it's worth a shot.  I would say Zach's hat helps him more than his sunglasses.  He always wears a hat outside.  We've just switched from the floppy hats to a baseball hat now that he's older.  The floppy hats should be easy to find now that it's summertime.  I think we got his from One Step Ahead on the internet.  The sun is not hurting your daughter's eyes per se, although direct sunlight damages everyone's eyes, not just people with albinism, which is why everyone should wear sunglasses!  It's probably just uncomfortable and makes her eyes water.  She's not really old enough yet to shield her eyes from the sun if she needs to, but she will learn.  Take care and enjoy your little girl!

Your son can do whatever a "normal" person can do as long as he wears sunscreen, a hat, and sunglasses.

I know this post probably isnt very recent but here goes. I'm a senior in high school and I still bury my head in whatever I can find while outside whenever possible. (Yesterday I was lying outside with my head buried in my hoodie.) The cool thing is that technology is getting so much better. You should definately go google "Rec Specs". They are sunglasses that look similar to goggles, so they cover the whole eye (even the sides). They're made to be prescription sunglasses that allow kids to play sports while wearing them. They look pretty cool if you ask me, and I wish I'd had them as a kid. I think they might definately help in the case of a younger child with albinism.

Good luck and God Bless.