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Coping Tips
The mother of a 5-year-old boy sends several useful tips:
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To soothe EPP pain on the backs of her little guy’s hands, she has stored a tub of baby wipes in the refrigerator: When he wants instant relief, he has learned to get several wipes from their box in the fridge, and put them on the backs of his hands.
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For swimming in a pool, her boy wears water ski gloves (HO sports x-factor youth gloves from http://www.anythingxtreme.com), and a UV-proof long-sleeve swim shirt (youth swim shirt from http://www.solartex.com/). He also wears a hat when he swims, but she did not mention the brand. There may be some sunhats at the sites she listed.
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She was also able to convince her school district to install a cover over the playground equipment at her son’s school. The cover is made by a company called Sky Shades.
Solumbra Shirts
An EPP Mom has kindly offered to give away the Solumbra shirts her kids have outgrown: 2 shirts with zippers at the neck, one small in royal blue and one medium in tan and navy; 3 crewneck shirts, all in medium, two in royal blue and one in teal; and 1 safari shirt, medium, in sage green. You can correspond with her at RVBAR@aol.com.
E-Pen Pal Requests
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The mother of a lively 5-year-old boy would love to correspond with moms of other young EPP kids. She can be reached at Cobaltfun@juno.com.
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The parents of a 7-year-old EPP boy would like to correspond with other EPP families. You can reach them at mmahoney@wwt.net.
An EPP Kid writes:
My name is Craig Leppert, and I’m 14 years old. I suffer from erythropoietic protoporphyria (or as we call it, EPP). I’ve had this disease since I was 3 years old. Now don’t get me wrong -- I don’t stay inside the house all day, as white as a ghost and with no friends. Actually. I was the captain of my football team and...get this...I was born in Hawaii! I don’t let this disease control my life. I won’t lie to you, I’ve been burnt so bad and it hurts so bad that I would rather cut off my right arm (not the left one) than go through that again. There have been so many nights where I stayed up with a bottle of lotion in my right hand and an ice bag in my left hand, my nose burning on fire. It’s like I put my nose on a stove and left it on there for, ah, let’s say a couple of minutes. I’ve never been to the beach during the day, and until I entered middle school, I was the only one in school without a tan. I do go tanning during the summer, some doctors say it helps and others say it doesn’t, but whatever helps me from looking like Casper the Ghost and not burn, I’m OK with. During the summer I mostly stay inside during the day and lift weights. The people at my school don’t treat me like a freak ‘cause, Hey! We’re not freaks, we’re only a little different! They’ve known me since kindergarten, so they understand it. Getting a girlfriend isn’t hard - girls seem to look past it when they see how much you have to offer. Yet, I can’t tell you how sad it feels to turn down a pool party invite because it’s from 2 PM to 4 PM. The best complement I can ever receive is when I tell people about my sun disease, and they say “oh, my gosh, I would never have thought YOU would have something like that!” I don’t know anyone that has this disease besides my one sister (and that girl from “Extreme Makeover” that had a related sun disease), so if you are feeling lonely and think there’s no one that understands you, e-mail me at JohnElway378@aol.com or Rukid333@hotmail.com.
Thank you and smile (heck, it might be a cloudy day).
Craig Leppert
That’s the news -- and the usual reminder: Don’t forget to send us your new address if you move!
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