Sandra De Santos, from Rio de Janeiro, said that she often finds people staring at her or she feels sad when she sees herself in the mirror. She suffers from neurofibromatosis type-1, a genetic condition that affects the nervous system and skin in many forms. It is relatively common, currently occurring in about one-in-three thousand births, but in differing degrees of severity.
The condition is genetic and three of her four children also have it. Her second child died at the age of six as a result of problems associated with it. She said: ‘I always asked the doctors if it was due to my condition, they said it wasn’t related to it. But when he died I read on his death certificate: ‘sarcoma due to neurofibromatosis’.
She has thousands of bubbles all over her body ‘ she said she became quite sad for a long time that out of three kids, two have the condition. But they look to me as an example, so she keep going.’ Sandra and her parents had no idea that she had any health problems until she reached puberty. Signs of the condition can appear at birth, and include the skin having several pale, coffee colour patches called cafe au lait spots, or the appearance of benign lumps – known as neurofibromers. When Sandra was diagnosed in the 1970s, very little was known about the condition. She said: ‘Everyday she woke up, I’d notice a new lump. She is however currently undergoing several tests.