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#16376 - 06/04/02 07:05 AM EHK and dealing with the sun
Mary Offline
Junior Member

Registered: 06/04/02
Posts: 1
Loc: wayland, MA, USA
Hello, my name is Mary and I have a nine-year old daughter with EHK and red hair. We live in the Boston area. She was diagnosed at 5 months but hasn't seen a doctor regularly for years because I couldn't find one who could give me any useful advice about what she can and cannot do in normal life, especially with regard to the sun. I had to find out by trial and error that she doesn't sweat and about Solbar sunscreen, the only brand that doesn't sting her terribly. Every year we start having problems as the seasons move from winter-spring-summer. Despite the sunscreen, her skin will get scalier with splotchy red patches and her cheeks will get bright red and peel and I can't tell if she is burning or overheating, because both make her sun peel. Once this starts, the sunscreen seems to irritate the skin and I end up having to keep her home from school praying for rain. This is getting worse as she gets older because she wants to be like the other girls and resists wide brimmed hats and sunscreen and moisturizer showing on her skin. Can anyone help me?

#16377 - 06/07/02 11:42 PM Re: EHK and dealing with the sun
pauline5 Offline

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Mary,

My name is Pauline and I am 37 and I have EHK. I don't know what I can advise you in regard to other sun screens, because to be honest I have never really used them, and when I did try one it wouldn't rub into my skin, it just sat on top. I also live in Australia so our products may not be available in the US. I keep out of very hot sun, but can sit in mild weather without a problem.

I guess your daughter having red hair makes her skin more prone to burning, so she should probably do activities in as much shade as possible. Overheating is a major problem with the sun, and I think we tend to automatically escape the sun when our body tells us we have had enough anyway. Ensure she has plenty of fluids, especially when it is hot.

Is or would your daughter be happy to wear nice lightweight long dresses with long sleeves in the summer, something that she would be comfortable wearing in her age group. I suppose some kind of compromise would be ideal where she could wear shorts and singlets if she wishes on milder days, and keeps the long sleeved dresses for very hot days.

I am sorry if I have not been much help to you, but these are just my thoughts from a practical side. Have a look through the posts and I am sure you will find some articles on overheating and sunscreens.



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