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June 14th, 2009

Hello everyone

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I am a life long heliophobe who is also extremely photosensitive. I cannot leave my house without sunglasses, and if I had a choice in the matter I would not leave my house during the day at all. The pain of sunlight aside, I do have gorgeous skin as a result of my avoidance of light. I no longer am bothered by the stupid comment of others ("You need a tan"...or the more common "are you sick?"), and have learned to see all of the beauty in darkness.  I am so pleased to have found this community, and I am looking forward to meeting all of you.



April 25th, 2009

here in Michigan but it is a double-edged sword as my skin catches on fire every year...it also seems to be getting worse each year.

April 24th, 2009

A few changes

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Kuu-Charcoal Feather
I know there are very few members here, so I thought it would be nice to expand a bit and hopefully get more members to discuss about hating the sun oh so very much.

So welcome to the Photosensitive Community!
There are enough sun worshipers out there that we should band together against their bad tans! =D

December 6th, 2008

Wow I totally forgot about this community. I hope there are still some people reading this.

So I have a question. Has anyone been able to notice climate change? I've been able to significantly notice it happening as each year passes. Sun season starts earlier and ends later and I can spend less and less time outside during sun season because the intensity has gotten stronger. The colder winters are nice, but non-sun season just keeps getting shorter and shorter.

Has anyone else noticed at all? Or disagree with my assessment?

June 20th, 2007

Intro!

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Machines Need Love Too!
Wow. I feel bad for kinda forgetting about this community and not even introducing myself.

I hope people on the Northern hemisphere are having a safe rainy cloudy summer and staying cool and people on the Southern hemisphere are enjoying the winter!

I'm Erin Leigh, 24, currently studying to be a nurse. I was diagnosed when I was 12 after going to a negligent and abusive summer camp. They badgered me into going outside and not letting me call my parents because I was a "hypochondriac" which with a week of sun exposure I started to form the physical manifestations: the purple lesions. After my parents came to get me we went to children's hospital and a very sweet dermatologist recognized the lesions. I was soon correctly diagnosed after that.

Before I was 12, people thought I was a hypochondriac or just a fussy child. My parents were sympathetic, but also didn't know what was wrong. I don't know if it's the same for all of you, but it takes a great deal of sun exposure to get any manifestations: the burning itching vascular pain comes far quicker than any signs do.

So I actually have a question. I use a parasol whenever I'm out, but I've started to notice other people who are using parasols too. I haven't gotten as many strange looks for covering up as I used to.
Have any of you noticed 'normal' people are becoming more and more sun smart?

EPP and pregnancy

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Sad/Sleepy
I was just wondering if any of you out there who have EPP have dealt with pregnancy as well? All information I can find regarding being a pregnant EPP patient is very positive. According to the APF, EPP symptoms have been shown to actually get better during pregnancy for many women.

Anyone have any practical experiences to share?

June 7th, 2007

The company's name is Coolibar.

The website URL is www.coolibar.com

I have ordered from this company before and have to say I like their stuff. I can personally recommend the "Spa Cover-up" and the "Women's Everday Blouse" as being comfortable, covering and cool to wear. The colours are a little limited but we can't have everything. I haven't tried their "Driving Sleeves" or "Driving Gloves" but I've been seriously considering ordering some as ordinary gloves are just too hot to wear in summer.

If you are looking for good layers that will protect you from the sun but won't cause you to die from heat exhaustion, I suggest you give them a try!

March 30th, 2007

(no subject)

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Machines Need Love Too!
Everyone (on the northern hemisphere) have a good start of sun-season?

I don't know for all of you, but I know I always have a tough time this time of year. I can dress however I want in the winter and spend as much time as I like outside, but come spring I have to watch what I wear and how much time I spend outside and when I do spend time outside I get all sorts of funny looks from passersby.

What's your best coping mechanism for the emotional stuff? I like a few video games in a dark room with some room-temperature southern sweet tea and bitching with loved ones.

With the physical stuff, nothing can beat AC in a dark room. What have you found to be the best?

Also, in terms of dress. What have you found to be a good style? Something that covers and still keeps cool?
So far I've used tights with a long flowy skirt, long sleeved shirt, gloves, floppy hat, and the most important thing: a parasol. I've found a parasol really helps both with the sun and with the heat. Portable shade! Right now, I'd like to try new things, like scarfs and shawls. Any recommendations?

November 29th, 2006

We're on TV~

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It could have been the bunnies
Hey all you sunhaters out there!
I hope you're having a wonderful fall and fast approaching winter! I know I am.

I just heard yesterday's episode of House MD's weekly diagnosis was a person with EPP. I'm going to do my best to track down an episode myself and if I find it digitally I'll share and we can discuss how well they did.

Also speaking of TV, ER seems to have done an episode on EPP as well. I don't know which one though. Supposedly they did a shitty job too, but either way does anyone know?

January 6th, 2006

t-shirt

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last night of freedom
i saw this t-shirt on jinx.com, and though ya'll might enjoy it too

http://www.jinx.com/scripts/details.asp?affid=-1&productID=484

*love* (:
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