All covered up!

during my rotation as a medical student in surgery, we had two week course in plastic surgery. while in the out patient clinic a young lady with her little girl entered. what was special about that girl is that she was all covered up from head to toe, wearing a hat, sunglasses long sleeved T-shirt, long pants and on top of all that she was covered with a cotton blanket.

the doctor recognized the family, greeted them and said: OK, show me your child's tummy. her tummy was covered all with blistered rash that looked so painful.also the doctor checked her hands and feet that were too swollen ans blistered and some fingers were starting to fuse with each other.

when the patient left the room, the doctor asked us what we think the child has. I had no idea but guessed that she had the xeroderma pigmentosum because the patient was well covered up, but instead the patient doen't have this disease, she had a sever form of a heridatory disease called epidermolysis bullosa that effect the skin and other tissues causing them to be so fragile that they are easily broken down by the simplest trauma, thus calling them the butterfly children.

while searching in the web looking for more information about this rare disease I found a site that is dedicated to this illness. what special about this site is that it is been made an epidemolysis bullosa patient. so what is more informative about the disease than learning from the patient's own word. please check out her site EB - through the eyes of a patient