hi, i'm new to this site. sharing my story w/you about my daughter who will be 10 in april. not only was she born w/idiopathic scoliosis (which was diagnosed at 15 months) she also was born w/a rare, incurable skin condition called epidermoylsis bullosa or eb. more info on eb, www.debra.org. getting back to scoliosis, our last appt 12/10/04 showed the s curve had progressed from (upper) 39 to 51 and (lower) 36 to 48. looking at her you wouldn't see quite see it. the curve has started to press into the lungs, which she feels at times, she has experience back pain. she does display a hump (lack of better word) on the right side of her back. her clothes are very partial to one side of her body and her torso has twisted. her right side of the chest is lower than the left. we were told that surgery at this point is the only corrective measure. she is scheduled for april 13. she will be 10 in april. she would be receiving 2 titanium rods along side the spine. w/her skin condition, the whole surgery issue makes it very difficult. the form of eb gabriella has is the mild form but the more severe subtype. simple short words, she is missing protein in the first layer of her skin. any trauma or friction peels her skin right off. she blisters very easily as this is the way for the skin to protect itself. we have to lance the blisters w/a sterile needle and at times bandage to promote healing and prevent infection. one out of every 50,000 are born w/eb. she's a tough cookie but i beside myself that she has to have the surgery. thoughts?
sylvia (mom) and dad w/o eb and no family history.
sylvia (mom) and dad w/o eb and no family history.
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