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More Coping Tips - Sunscreens
Several members have asked if certain sunscreens would be effective for EPP people. A new ingredient which was asked about is Mexoryl SX – but according to data from its makers, it only works well for short-wavelength UVA rays – those from 320 to 340 nanometers. The rays that bother EPP people are those from about 360 to 500 nanometers, in the visible range of the solar spectrum. However, if Mexoryl is in a sunscreen that also contains some blocking agents, such as zinc oxide or titanium dioxide, that sunscreen might be worth trying, as the blocking agents will be what will be effective for EPP people.
Another EPP person mentioned Sephora (www.Sephora.com) as another company that markets sunscreens. I checked their listings, and two sunscreens they list may work for EPP people: 1) Korres Natural Product Watermelon Sunscreen Face Cream – it contains titanium dioxide and zinc oxide, and 2) Bliss Oil-free Sunban Face cream – it contains titanium dioxide. Although these products are both listed as face creams, there should be no reason why they would not also work on arms or hands.
We have mentioned in the past COTZ, which is made by Total Block (www.totalblock.com) – it contains zinc oxide and titanium dioxide, and can be used over the entire body.
However, please remember our past suggestions about trying a new sunscreen – just put it on a small area, such as part of an arm, and expose that area, while keeping the rest of your body covered as you usually do to prevent reactions. Keep the area on which you have applied sunscreen exposed for the time it would take for you to get your symptoms, then cover it, and see if you get a reaction. Don’t forget to let us know if you find a sunscreen that prevents your symptoms – it may work for others too!
Gene Therapy Update
In EPPREF NEWS issue Number 35, we discussed gene therapy for EPP, and mentioned that the Roth lab team collaborating with scientists from the Harvard-MIT Health Sciences and Technology group had cured the mouse model of EPP with gene therapy targeting the bone marrow. Our group was the first to do that, publishing our results in the July, 1999 issue of the journal, “Nature Medicine”. Since our results were published, other scientists have also cured the EPP mouse model with bone-marrow gene therapy using different viral vectors than we did. However, as was reported at this year’s meeting of the American Society of Gene Therapy, there are still some safety issues with viral vectors and bone-marrow gene therapy in people, as we had reported there were problems in issue 35. Although progress has been made in understanding and correcting the problems, they are not all solved at this time. Thus, unfortunately, we are not quite yet ready to attempt gene therapy in EPP people. So – do stay in contact with EPPREF, as we will plan to do studies and announce them in EPPREF NEWS, once the US FDA and National Institutes of Health say it is safe to do human bone marrow gene therapy studies.
That’s the news
– let us hear from you, especially if you have any “coping tips” you would like to share with other EPP people.
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