Danny Parks
Dear Brandy and Cameron, I am sorry to hear you both have EB. I also have EB simplex. I have 6 children and 3 of my children have EB simplex. When I grew up I tried to hide the fact that I had EB from as many people as I could, but I believe that was a mistake. With my kids I have talked to their teachers, fiends, and neighbors about EB and answered all their questions. I have found that people are willing to help in anyway that they can. A couple of my children have even given a special report of their disease in their school class so that everyone understands. I have many cousins and relatives with this disease. At family reunions we usually sing a song we made up called the blister bunch (humerous). You can have a wonderful life with this disease if you plan vacations during the cooler times of the year and learn to prevent blisters the best you can. So good luck my prayers are with you.