Age Group: School Age
Type of Need: Other
Amanda has Blue Rubber Bleb Nevus Syndrome (BRBNS). This is a rare venous malformation disorder affecting mostly the skin surface and gastrointestinal tract. Most of her skin surface tumors are around the neck and a few are in isolated locations including the arms, fingers, and lip. Because the lesions inside the GI tract bleed, she has chronic anemia that requires periodic blood transfusions. She also has a deformed left foot and scoliosis condition.