my name is jamie. i am 31 and have a little know disease called epidermolysis bullosa. i have junctional non-herlitz. i am the only one in my family with eb. my 2 kids are eb free. i have my good days and bad days. right now i am blister and wound free pretty much. summer seems to be my bad time.
when i was born, there was very little known about eb. it took them 2 years to figure out i had eb and 9 years to figure out which form. i am glad there are so many more resources for parents and eb patients now. my parents just kind did what they thought was right. they didnt know i wasnt to wear tape or bandaids til i was 9. i refused to tell anyone at school that i had a skin condition. only my closest friends knew. i didn't really open up about til i graduated from high school.
i can no longer work because my condition has madw it impossible to hold a full time job. i get diasability. Since people cant see a phyiscal problem they think i am just lazy. i wish i could work, but i am enjoying being a stay at home mom to my youngest. i missed all this stuff with my oldest because i was working 12 hours a day 6 days a week when she was a baby. that is all for now, i am tired.