Thanks to the Brigham & Women's Hospital, EPPREF now has its own web page! On our page, we have back issues of EPPREF NEWS, as well as a document "Information About EPP for Patients and Their Physicians", and information on MedicAlert. We plan to keep on putting issues of EPPREF NEWS on the web page, as well as other items we think may be helpful to EPP people. So, if you have access to the web, check our page every so often. Obviously, though, we will print anything that we will put on the web page also in EPPREF NEWS - but the web page will come in handy in case you lose your copies of EPPREF NEWS! Our web address is: http://www.bwh.partners.org/eppref.
A PEN-PAL REQUEST
A 15 year old Australian girl wants to correspond with other teenagers who have EPP. If anyone is interested, send your name, mailing address and e-mail address, if you have one, to EPPREF, and we will send it to her.
BETA-CAROTENE - AGAIN
Recently there were articles in the press about a National Academy of Sciences panel report on vitamin requirements, discouraging the over-use of supplements. Beta-carotene was mentioned, again talking about the finding reported several years ago that in certain people who were heavy smokers and also asbestos workers who were taking beta-carotene in a cancer-prevention study, there seemed to be in some cases an increase in lung cancer, but in another study, heavy smokers also taking beta-carotene in a cancer prevention study did not develop lung cancer. If you remember, in issue 20 of EPPREF NEWS (also in "EPPREF NEWS - The First 20 Years" on the web page, in case you have lost issue 20) we discussed this at length. We repeat what we had said at that time: 1) if you don't smoke, keep taking beta-carotene (Lumitene) if it helps you; 2) if you do smoke and still want to take Lumitene, STOP SMOKING IMMEDIATELY! (the studies found that people who stopped smoking did not develop excessive lung cancer); 3) if you don't want to stop smoking and still want to take Lumitene, you are taking a chance: we cannot predict whether or not you would ever develop lung cancer. You will have to make this "risk/benefit" decision for yourself. You should know that smoking, whether or not you take beta-carotene, does other bad things to your body besides causing lung cancer, so it is really to your benefit to STOP SMOKING!!
THE USUAL REMINDER
Nothing exciting new to report at this time on EPP research - we are still working on gene therapy, but it will take some years before what we do successfully in animals can be applied to people. So - the important thing for you is to KEEP IN TOUCH WITH US so you can be informed about new developments, studies, etc. Which means, DON'T FORGET to give us your new address if and when you move, if you want to keep in touch - the Post Ofice has cut way back on the length of time that it will forward mail.
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