which is short for Epidermolysis Bullosa! There are many different forms of this and he has one of the mildest! But there are forms of this that is fatal! We are lucky because he does not have the fatal form. This genetic disorder runs on his father's side of his family. His Dad has it, his grandmother has it, he has a half brother that has it, and an aunt and other distant relatives all on his dad's side. He get's painful blisters that form on the soles of his feet and in between his toes! The blisters are not like the blisters that you get from your shoes rubbing... these blisters start from the deep under layers of his skin and work their way up!!! the skin covering the blisters is very thick! the way that it was explained to us is, he lacks a certain enzyme in his body that anchors the top layers of his skin to the tissue underneath! This causes fluid to build up between his top layers of skin and the tissue under it and it causes painful blisters to form! Kids with the more severe forms of this disorder usually die before they hit their teens!! We are lucky that my child doesn't have this form but it still is a very painful condition for him!
But anyway... I am just wondering if there is anyone out there who has this contition? We are looking for support groups or even further information! There is an online group called DEBRA but this is the only one that I have found so far! so if anyone knows anything about this condition or knows of a support group or has any info for me it will be very much appreciated!
Thanks!!
~~happybrandee~~