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Deedee Glover

Hi! My name is Deedee and I have been diagnosised with EPP for about 32 of my 34 years of life. It is so hard to live with it, especially now I have 3 teenaged children and am at the ball field alot. I always know to put on alot of sunscreen before I go along with heavy long sleeves, my hat, umbrella and sunglasses. I live with the smell of sunscreen. I also live with the expressions of others faces. My children feel bummed over the reactions of others but they know why I have to dress this way. I know I look like a freak but if they only knew how painful it is to have the sun, they might understand.

I have been in the hospital three times this year due to EPP. The ER doctor had no idea what was wrong with me and had never heard of EPP. Needless to say I gave him a quick course while laying in a emergency room bed with a pca pump going and lots of problems with my liver studies. I am at 45% liver damage at the present time. I am also frequently having gallstones appearing even without a gallbladder. However I could handle all of this if only I were able to go to the beach with my kids. We miss lots of fun times due to my disorder.