chat rooms

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Originally posted by Jay

I was wondering if there were any chat rooms for people with KP.It would be nice to chat and share with people that are living with KP.My case of KP has worsened over the past 7 months.I don't know what I am going to do.Hiding my legs and sweating the past 10 summers was pretty bad, but at least then I could cover up my legs and my upper arms.Now my forearms are covered with very noticable red spots.People will think I am crazy here if I am walking around fully clothed in 100 degree whether this summer.Maybe I will just stay indoors from now on, and work from home stuffing envelopes or something crazy.How does everyone else deal with KP on a daily basis.Does everyone try to cover it up like me, or do of you somehow not let it bother you.Any advice is appreciated.

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Originally posted by Chris

Jay, have you read my postings re:Erythrymcyin gel 2%?? Please try it.. Using it 2 weeks on my son's face and he's 50% better.. He's only 8. Does not have acne.. He as KP, diagnosed by more than one derm.. It can take up to 6 weeks to work but we are seeing results in just 2 weeks.. Thanks, Chris

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Originally posted by hopeful

you are not alone with your struggles my friend! i've been covering up because of KP for my entire adult life. Long sleeve, pants and jeans are what i have worn for pretty much the past 20 years. and yes, it is very uncomfortable in the steaming hot weather and you do get tons of questions about it. it is very frustrating and upsetting, especially when you don't tell anyone why you keep covered up. i do think, though, that there may be a light at the end of the tunnel. this past summer was the first summer in years that i was able to wear short sleeved shirts because i was using a prescription ointment on my arms that drastically improved my KP. i've since stopped using it because it is messy and expensive and isn't formulated for long term use. what i have been using is the 3% SA sulfur soap followed by a urea moisturizer. my arms are now 90% clear but i have to scrub every morning or more of those little buggers will appear on my skin. but i think you would agree that 2 minutes in the shower for clear skin really isn't that big of a deal. if you aren't scrubbing with the sulfur soap i really think you should give it a try. i've had a very severe case on my arms (and everwhere else!) since i was born. the bumps were all over the place and were very red and unattracitve looking. now my arms look better than they did with the prescription ointment and i never, ever thought that would be possible. at the rate i'm going, i will be able to wear short sleeves this year without even having to get a tan first. you have no idea how huge that is for me. well, maybe you do...
anyway, good luck and please try the sulfur soap if you haven't already

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Originally posted by Jay

Thanks for your response, I have read some of your previous postings and I was wondering if you would mind giving your e.mail address.

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Originally posted by Bianca

A chat room would be nice!

Yes im the same as you, i cover up my arms all the time, i'd never go in public without wearing something long sleeved. I do have a few on my forearms but they arnt as noticable (yet..) so when i can, i wear 3/4 length sleeves. Summer is torture! I don't wear shorts or skirts either but not cuz of KP but because im not very comfortable with my body shape down there, so yeah basically im covered from neck to toe every day, i wish i had a better self esteem and didn't care wat people thought of me in public... oh well wat can u do.
I was thinking that maybe when we cover up our KP we might be making it worse? Maybe they need air to get to them or the fibres in the clothes irratate them?

Good luck, and hope ur KP improves. Try buy light coloured clothing for summer and lightweight material so u don't boil to death! cya!