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MORE ON SUNSCREENS
New sunscreens are coming out all the time, many having protection well into the UV-A region, as well as offering protection in the UV-B region, the area directly causing sunburn (280- 320 nanometers (nm)). The UV-A area of the sun's spectrun is divided into two sections: the UV-A-II region (320-340 nm) and the UVA-I region (340-400 nm). Since the UVA-I region is close to the range to which EPP people are sensitive (main sensitivity at 400-410 nm), and sunscreens usually have some degree of overlap in the low 400 nm range, some EPP people get benefit from some of the sunscreens marketed as "UV-A sunscreens". Most of the sunscreens attempt to offer protection to the whole UV-A region (320-400 nm). So, we will continue to tell you about new UV-A sunscreens. The UV-A range does not directly cause skin cancers, as does the UV-B range, but it seems to be involved in skin aging, and diminishing immune function, so people are anxious to protect against these also bad effects of sun exposure.
The ingredients which have the most effect against the UVA-I region are avobenzone (Parsol 1798), microfine zinc oxide and microfine titanium dioxide. So, look for sunscreens containing these ingredients. Listed here are some sunscreens which contain one or more of these ingredients. We don't guarantee that these will work for you, but they are worth a try. Each of you really has to try them for yourself, as each person is different, and we can't make general statements about what might work for you.
BioSun (Biosun: 1-888-2BIOSUN): these come in different "spf" (sun protection factors) - best would probably be an spf of 45. An EPP kid's Mom tells us that this sunscreen can be found at Walmart or Walgreens.
Water Babies 45 by Coppertone seems to work, according to an EPPREF member.
Total Block (Fallene, Ltd.: 1-800-332-5536): this brand claims to protect from UV-B through the entire visible spectrum.
Two sunscreens which we have mentioned before - PreSun Ultra and Shade UVA Guard also work on UV-A.
We are going to try and make arrangements with some UV-A sunscreen manufacturers to provide samples for you to try - watch for news on this in the next issue of EPPREF NEWS.
SUN-PROTECTIVE FABRICS
The Solar Protective Factory makes SolarWeave, a fabric which has a spf or 30 or greater. They have a web site you can check - www.solarweave.com. However, the fabric may block only UV-B rays. Many manufacturers use the Solar Weave fabrics to make sun-protective clothes. It is wise to see if sun-protective clothes manufacturers claim that their clothes block UV-A as well as UV-B rays.
Solar Eclipse makes clothes out of a fabric they claim blocks 99.9% of UV-A and UV-B rays - this may work for EPP people. Their number is 1-800-878-9600.
Also on sun-protective clothes: an EPP Mom suggested that it might be nice to have a "swap service" for kids' outgrown clothing. If you have any that you would like to give away, please write to EPPREF NEWS and we will list your name, phone number or address and what you have available to give away or swap in the Spring issue of EPPREF NEWS.
A NUTRITION TIP
EPP people sometimes have low hemoglobins. It is a good idea to make sure you always have enough iron in your diet to met the "recommended dietary allowance" for this nutrient to avoid becoming anemic. The "rda" is 10 mg/day for men, 15 mg/day for women 25-50 years, and 10 mg/day for women over 50. For pregnant women, the suggested allowance is 30 mg/day. Check your food labels for iron content. Our hospital's dietary department lists the following as good sources:
- Product 19 cereal - 1/2 cup - 12.0 mg
- Quaker Instant Oatmeal - 1 packet - 8.4 mg
- Blackstrap molasses - 1 tbsp - 3.5 mg
- Top sirloin, lean - 3.5 oz - 3.4 mg
- Spinach, boiled - 1/2 cup - 3.2 mg
- One baked potato with skin - 2.8 mg
- Red kidney beans, boiled - 1/2 cup - 2.6 mg
- Raisins, seedless - 2/3 cup - 2.1 mg
EPP INFORMATION
Some of you have asked for concise information on EPP and how to treat it to give to your physicians, if they are not familiar with EPP. We have prepared a one-page summary as a separate page of this issue of EPPREF NEWS. Keep it in your files. You can photocopy it as many times as you need to, to give to the various doctors you see. For example, if you ever need any surgery, you should give a copy to the anesthesiologist as well as to your surgeon. NOTE: This form is on our page - click on "EPP INFORMATION" in the Patient Resources section of our home page and then print yourself a copy.
A REQUEST FROM DR. ROTH
As we have stated in the past, EPPREF has no dues, since we have been supported by "spontaneous" contributions from EPPREF members. Also, in the past, some EPPREF members have sent spontaneous contributions to EPPREF, saying that they wanted to support my research in EPP. Thanks to one such contribution, I was able to purchase a much-needed UV-visible spectrophotometer and a fluorescence microscope: both instruments are helping my research tremendously. At this time, I am actually asking for contributions to support our research on EPP: as in the past, such contributions are tax-deductible to you as a charitable contribution. Contributions of any size will be gratefully accepted. I want to emphasize that these contributions are totally voluntary and optional, and are NOT dues - if you don't contribute you will STILL be a member of EPPREF in good standing, and receive the Newsletter. (ED. NOTE: this issue of "EPPREF News" appeared before we put the News issues on our web page. If you want hard copies of each issue, you need to write to us and get on our mailing list. But everyone, on our list or not, will be able to access future copies from our web page.)
The reason for this request is that our research on EPP is getting exciting. We are focusing on the possibility of gene therapy for EPP - this would cure EPP. There is an animal model of EPP - a strain of mice which have EPP. The mice are light-sensitive and have high levels of protoporphyrin, just like people with EPP. We have done some preliminary experiments which to date appear successful. In one study, we did a bone-marrow transplantation from normal mice to EPP mice - this cured their light-sensitivity and brought porphyrin levels down to normal. In the second study, we did the kind of thing we would do with people - we isolated blood "stem cells" from the marrow (in people we would isolate them from the blood), added the normal gene for the enzyme which is defective in EPP to the stem cells, and re-transfused the treated cells into the EPP mice. This experiment is going on now - but at one and at two months after the EPP mice received the treated cells, their protoporphyrin levels and light-sensitivity are down, so this gene therapy study seems to be working. Obviously, this experiment must be repeated. I have joined forces with some scientists who are in the field of bone-marrow targeted gene therapy to do the EPP mouse studies, and they are excited about the prospect of our animal work, and eventual use of gene therapy in EPP.
Unfortunately, the NIH, the usual source of disease research funds, does not fund preliminary work. I am using EPPREF money for the mouse work, and I also had to buy an additional instrument crucially needed for this work, a recording spectrofluorometer. So, if you would like to contribute to our research, we will be grateful for anything you care to give. Please make your checks payable to "BWH - EPPREF". The BWH stands for the Brigham & Women's Hospital, where the EPPREF funds are located - but be assured that your contributions go exclusively to EPPREF. Also, I don't ever want anyone to feel they HAVE to contribute - please don't feel pressured to do this. Also, please know that any contribution to EPPREF is never used for salary support for me: contributions are used to buy equipment and supplies (chemicals, glassware, mouse "room & board", etc.). I am so enthusiastic about and committed to the possibility of gene therapy for EPP that I am happy to work on this project for no salary, and will continue to do so until we get advanced enough in the research to get an NIH grant.
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The fact that we - and maybe also other scientists in Europe and even in the US - are thinking in terms of gene therapy to cure EPP makes it the more important for you to keep in touch with EPPREF, so that when this work gets to the stage of treating people, you will hear about it! So, the annual recommendation - keep EPPREF informed of your address, or if you have access to the Web, keep checking the EPPREF web page for further issues of EPPREF NEWS.
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