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EPPREF’S NEW WEB ADDRESS
The Brigham & Women’s Hospital, where EPPREF is located, has revamped its web-pages, and as a result, all departments, including EPPREF, have new web addresses - ours is:
http://www.brighamandwomens.org/eppref
Do make a note of it for your future use. Also, if you want to e-mail EPPREF (for example with address changes) or Dr. Roth, please use her e-mail address: mmmathroth@bics.bwh.harvard.edu.
MORE COPING TIPS
Protective Clothes. A member sends us two web-sites to check out - one in the US and one in Australia (they are extremely sun-exposure conscious, because of a high incidence of skin cancer in their country). The sites are: www.americansun.org/pages/Members.htm#catalogs and http://www.arpansa.gov.au/uvrg/.
Sunscreens. Two members have written us about sunscreens which work for them, The sunscreens are: 1) Hawaiian Tropic Ozone Sunblock with UVA/UVB/IR protefction and a sun protection factor (SPF) of 70; and 2) MicroBan 30+, which is available in Europe and effective for UVA and UVB and has an SPF of 30. It is made by SpirigPharma AG - their web-site is www.spirig.ch.
Lumitene. The company which produces Lumitene has a web-site - www.epic4health.com. You can order Lumitene directly from their site. It also has a good information page on Lumitene. Its address is www.epic4health.com/lumporepp.html. I am told that people from anywhere in the world can order Lumitene from them, though you may want to e-mail them to find out exactly how to pay - they do accept credit cards. They do have an 800 number for US and Canada - 800-866-0978. For other parts of the world, call them at 1-516-333-3050, and tell them you want information on Lumitene, and they will connect you to the appropriate person.
Vitamin B. Complex. One member wrote saying that taking a vitamin B complex supplement, containing thiamine, riboflavin, niacin, vitamin B-6, Folate, vitamin B-12, biotin and pantothenic acid, considerably decreased photosensitivity year-round. Double the regular dose recommended on the bottle was taken during the summer. Our understanding is that taking high doses of b-complex vitamins does not cause any toxicity, as opposed to vitamins A and D, where you can run into problems if you take more than the recommended dose. Also, vitamins E and K can also be toxic at several times the recommended dose. So it may be worth trying B-complex - but we don’t guarantee a thing! If you do try and it helps you, please let us know!
Celebrex. A patient wrote that taking Celebrex, a “non-steroidal anti-inflammatory drug” (NSAID), which he was taking for a back injury, also helped his photosensitivity. We cannot recommend this for routine use - NSAIDs are powerful drugs and can cause some pretty severe complications, such as stomach and esophageal ulcers and hemorrhages, and some liver problems. So, we recommend that if you need to take NSAIDs for arthritis and other conditions and you find that they happen to decrease your photosensitivity ask your doctor to monitor your liver chemistries and porphyrin levels every 4-6 months. Certainly you should not hesitate to use NSAIDs for the conditions they are meant to treat, but we would not recommend people who do not have arthritis, etc. to try them for EPP, because of their potential for serious side-effects, unless nothing else helped the EPP symptoms. Then, discussion with your personal physician, and careful montoring of porphyrin levels and liver chemistries are warranted. .
PEN-PALS, ETC.
An EPPREF member from Australia asks if anyone knows of an EPP support group down there - if any of our Aussie members knows of any, please e-mail us with contact information, and we will put it in our next issue, which will also eventually end up on our web-site.
Caraid O’Brien, an EPP college student, would like to communicate with other EPP people who are sensitive to flourescent light. You can e-mail Caraid at CaraidOBrien@aol.com.
A comment on fluorescent lights - if they bother you at work (or school) get the maintenance department to replace the lights over your work area with “incandescent output” fluorescent tubes. Most of the big bulb manufacturers make them.
A safety comment about meeting people on the web - we are sure you have heard about problems occurring when people who have been corresponding on the web try to meet each other in person. It is probably safer not to do this, or if you decide to, never to do this alone.< If you hear from someone and find out his/her name, you can always contact EPPREF and we can tell you whether or not that person is a member. Unfortunately, these days it is better to be cautious.
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