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-   -   Sun exposure question (http://birthmark.org/board/showthread.php?t=6492)

ashesmom 08-21-2013 01:52 PM

Sun exposure question
 
My daughter has a mild (light red) port wine stain that is on the entire length of her arm. The pedi dermatologist she saw for the first few years had us wear a sun sleeve outside to protect it from exposure. Our new dermatologist said not to bother, sun exposure won't affect it enough to bother with a sleeve. Hot weather always make her stain turn bright red, people usually think she is sun burned and the few times we let her out without her sleeve it does seems to stay darker longer. Does anyone know if sun will make stains darker over time? Two different opinions and not sure who to follow, out gut tells us to keep the sleeve on her, while she is little and it doesn't bother her and then she can make up her own mind when it does.

missy 08-21-2013 02:34 PM

Hi and welcome!

If you want another professional's opinion, write to Dr. Nelson via http://birthmark.org/experts.php

However, I've always heard that sun exposure will worsen PWS and most doctors and patients will recommend sunscreen at least. Of course, that is true for most everyone now.

My kids both have swim shirts for the pool or the beach. These are those long sleeved, thin, ultraviolet resistant shirts and they LOVE them. If you google "spf shirt" you'll find lots of places selling them.

My opinion is to err on the side of caution. If you can afford a sleeve or shirt, why not? Since lots of kids are wearing them now, at least she won't be teased.

Missy

kaykay 08-23-2013 12:12 AM

ya wanna know something weird ? the birthmark on my lip, i constantly use lipbalm with and Spf in it even if i am inside. i KNOW it gets sun burned. But my cheek ? it feels like it never gets sunburned but my nose and forehead will. despite scars on my cheek i got skin cancer on a scar on my NOSE instead.

but i say always use caution whether you have a birthmark or not. as much as i hate to hide these blonde locks, i wear my hat almost every time i go out now. helps keep the hair outta my eyes anyway

ashesmom 10-06-2013 01:59 AM

Thank you for responding! Forgot to write that before now.

olchan 10-28-2013 08:53 PM

Quote:

Originally Posted by ashesmom (Post 26935)
My daughter has a mild (light red) port wine stain that is on the entire length of her arm. The pedi dermatologist she saw for the first few years had us wear a sun sleeve outside to protect it from exposure. Our new dermatologist said not to bother, sun exposure won't affect it enough to bother with a sleeve. Hot weather always make her stain turn bright red, people usually think she is sun burned and the few times we let her out without her sleeve it does seems to stay darker longer. Does anyone know if sun will make stains darker over time? Two different opinions and not sure who to follow, out gut tells us to keep the sleeve on her, while she is little and it doesn't bother her and then she can make up her own mind when it does.

My son is 2 years old now. He has the same exact birthmark on his left arm. Can I ask if you had any laser treatments done on your daughter? Unfortunately, my son has eczema too and it makes his pws much darker than it really should be if he didn't have the eczema. How old is your daughter now?

missy 10-28-2013 11:04 PM

Olchan,

Has your son received any laser treatments to date? How do they handle his eczema during and after?

Missy

lma 02-01-2014 07:19 AM

I am 33 years old with a pws on my chin. I admit that in my more vain teens and early twenties I sunbathed without sunscreen (sometimes even using oil to enhance the tan). My pws was never affected due to sun exposure. I am now diligent using sunscreen for many reasons now that I have grown and mature. I am also more cautious because of the potential of increased pigmentation and texture to my pws as I age. But still no effects from the sun. This is just my experience, it never hurts to consult with medical experts as everyones pws is different.

davinderhora 02-03-2014 03:50 AM

How to manage sun exposure?
 
Hi All,

I wanted to know how do people manage sun exposure for their kids with PWS. We are in India and here the heat and sun is really very bad. My kid is turning 2 soon and we plan to put her in preschool where she will be sun exposed as well. We are so much worried that despite of sunscreens her PWS will get darker because of the sun. We can't avoid her going out in sun and playing with other kids as well. Can other parents share their experiences about their kids sun exposure? Also she has gone for 6 laser treatments so far for her facial PWS and till now we have not sun exposed her even once. But now it looks difficult with schooling and her growing.

kaykay 02-05-2014 11:33 AM

Hi davinderhora

this is a vid i did from my own experience https://www.youtube.com/watch?v=So2xKKVXowE#t=0

I live in the tropics so i can relate. just make sure she uses sunscreen if she's going to be outdoors for an extended time. also teach her why she needs to use it. she can still be a kid and not miss out on the play time ! and a hat too. i use to be on the beach fishing for hours an never had my pws get darker. if you do notice any changes, talk to her teachers if you think its necessary and just ask them if they are going to be outside for a long time to make sure she has on sunscreen


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