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MORE COPING TIPS
Protective Clothes and Other Sun-protective Devices. The American Sun Protection Association (ASPA) maintains a list of companies and the sun-protection products they sell. Check out their website for a list of their member companies. Their web address is: www.americansun.org.
Protective Window Films. The Madico Company, makers of sun-protective films for cars and building windows, has a web-page on which they list the distributors of their products - in the US, Canada and worldwide. Their web address is: http://www.madico.com. This page does not contain any technical information about the films - to get that, if you want it, call one of the distributors.
We also reprint with permission two articles which you may find interesting and useful: "Manage Your Own Medical Journey" from the Genetic Alliance newsletter, the "Alliance Alert", and "Physician/Patient Email Information" published by Brigham & Women's Hospital.
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A SURVEY
Do you have any of the following diseases? If you do, please fill in this form and send it back to Dr. Roth at EPPREF at the above address. Since we know on which chromosome the gene for EPP is, it might help us find genes involved in these other diseases. (NOTE: we will not release any names of survey repliers to anyone -we will either list in EPPREF NEWS or send survey responders the names and addresses of researchers studying these genes for you to contact them if you wish.)
NAME:__________________________________Present age:____________
Diabetes: type 1 (childhood)____Type 2____Age you developed it______
Rheumatoid arthritis _________ Age you developed it______
Scleroderma_________ Age you developed it______
Hypothyroidism (underactive thyroid):_____Age you developed it______
Hyperthyroidism (overactive thyroid):_____Age you developed it______
Multiple sclerosis:_________ Age you developed it______
Lupus: systemic:_________discoid:_________Age you developed it______
A PEN-PAL REQUEST
EPPREF member Lance Miller would like to talk to other EPP people either on line or by mail. He is 20 years old. His "snail mail" address is:
Lance Miller
41 Saxon Lane
Calera, AL 35040
He gave his e-mail address as: Glatiator81@hotmail.com.
MEDICATION ALERT
We reprint an article from TIME magazine by their medical consultant about the dangers to the liver of Tylenol. Most of the danger is caused when people drink alcoholic beverages when taking Tylenol. As EPP people, you are advised NOT to drink, so the alcohol connection should not be an issue for you. However, we thought this article was important enough for you to pass the information on to family members, especially if they have arthritis, or other chronic pain problems for which they take Tylenol. We called the company, and according to a pharmacist there, Tylenol does not cause cholestasis, the slowing down of bile flow in the liver. So, EPP people can take Tylenol, but should NOT go over the 4,000 miligram per day recommended maximum dose. Their recommendation also is if people drink, they should not take Tylenol if they have 3 or more drinks a day. The important point that the TIME article made is that people need to remember that there can be a real problem in overdosing certain over-the-counter pills - just because they don't require a prescription does not mean that they are safe at high doses.
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