EPPREF is Going Green!
To help conserve trees, we have decided to stop mailing out copies of EPPREF NEWS – this is the last issue we will mail out. We will be publishing EPPREF NEWS only on this website. Remember, we already have been putting issues on the stie as they are produced. Since so many people have computers, and public libraries do also, we figure that stopping the mailing of issues will not be a great handicap for EPPREF members, and we will all be helping out the environment.
Do you want to know when we put an issue of the NEWS on the website? Then send your email address to mmmathroth@rics.bwh.harvard.edu and we will add you to the list. We will NOT give the list of EPP peoples' email addresses to anyone else.
Effective Sunscreens
Several people have sent in the names of sunscreens they have found helpful:
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Blue Lizard SPF 30 for sensitive skin (white tube) – it contains zinc oxide and titanium dioxide; make sure to work it well into the skin.
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Total Block 65; it contains iron oxide.
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Anthelios XL, SPF 60.
Other Items of Interest
A protective juice drink? The wife of an EPP guy told us that her hubby, and his sister who also had EPP, had found that a fruit and vegetable drink, Juice Plus+, seemed to give them some protection from the sun when they went outdoors. Since it is made of fruits and vegetables, it contains lots of carotenoids (including beta-carotene and probably other plant-based antioxidants, all of which could help prevent light sensitivity). Check out their web page: http://www.juiceplus.com/. If you decide to try it, increase your sun exposure slowly, as we have stated previously.
Which states have the most cloudy days? A member told us about a website that has a map of the U.S. that shows the mean number of cloudy days per year, sunrise to sunset. You can see how much shade your home town has in comparison to the rest of the country at http://cdo.ncdc.noaa.gov/climaps/sky51c13.pdf.
Solumbra kids clothing. The mom of an EPP kids wrote to say that she has some Solumbra shirts and pants of various styles, sizes 8-12, which she would like to give to other EPP kids. You can contact her at sandygirl@frontiernet.net.
Kids swimsuits available. An EPP mom has let us know that she has two long-sleeved long-legged SPF swimsuits from Australia that her child has outgrown. Her child wore them from ages 5-8. If you are interested, contact er at RohnRanch@charter.net.
Medical insurance coverage for purchase of Lumitene. An EPP guy who is a pharmacy technician told us that Lumitene can be covered by medical insurance companies if you have drug coverage, but it may take a while, due to the necessary paperwork. The MDC number for Lumitene is 1465-4658-08 – you might need to give it to your druggist.
A Request for EPP Kids
Here is a note from Meghan: "Hi, my name is Meghan and I am 8 (almost 9) years old. I feel like I'm the only one in the world with EPP – No one has ever heard of it before. If there is someone else out there that feels the same and has the same kinds of stuff to deal with, maybe we could be 'e-pals'. My email (mom's really) is rohnranch@provide.net. Thanks, Meghan."
So that's the news. Don't hesitate to contact us (or call us at 617-525-8249) with materials for the next EPPREF NEWS, questions about EPP, etc., etc.
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