Additional Coping Tips
"Spring is sprung", as the saying goes, so here are a few recommendations on sunscreens which have worked for some EPPREF members:
-
Rocky Mountain Sunscreen –
http://www.rmsunscreen.com – it has a sun protection factor (spf) of 50+ and contains titanium dioxide, which is known to protect against visible light exposure.
-
A teenage EPP kid's Mom recommends a sunscreen called "Zinc and Aloe B Brown", made by Aloe Up B –
www.aloeup.com/Prod-26-1-78/Zinc_and_Aloe_-_Brown.htm. Her active kid applies the cream to his nose, ears, face, etc., and she says it helps him and nobody notices the cream. They found the sunscreen sold in a surf shop at the beach, but you can contact the company via the web, and either order it from them, or find out who carries the product near where you live.
-
The Director of the American Porphyria Foundation told me about a sunscreen called "Sun Sense" made by a company called "Ego Pharmaceuticals" (I think it is an Australian company) that a patient who has Variegate Porphyria, a liver-based porphyria which also has skin sensitivity to visible light, said works very well for her. It may not be available in the US, but I am including it for the benefit of our European members; it may be worth a try.
-
Another EPP person mentioned having had success with a sunscreen called “Ocean Potion Suncare Face Potion”, which has an spf of 45 and contains zinc oxide. She got it at Walmart.
But remember our past suggestions about trying a new sunscreen – just put it on a small area at first, 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 reaction, then cover the area, and see if you get a reaction.
Don't forget to let us know if you find a sunscreen that prevents your reactions – it may work for other EPP people too!
An Accomplishment
An EPP Dad tells us that he was able to organize a fund-raising campaign to get stadium lights installed at his son's high school's football stadium, so that the team could play night games as well as day games. There is a great write-up about this success story at http://nj.digitalsports.com/conferences/3/articles/3559-lighting-up---manchester-football-feature.
So that's all the news – do let us know about your accomplishments – either in finding items which help you stay active outside in spite of EPP, or things that you have done to raise awareness of EPP and make things easier for EPP people. We look forward to hearing from you!!
Send Feedback to: 
