Sandra De Santos, a 53-year-old resident of Brazil, has long come to terms with her condition because her disease is incurable. The woman's skin is densely covered with hundreds of vesicular tumors.
Most of all, she worries about the fact that the same disease was passed on to three of her four children, and one of her children died at the age of 6 due to the fact that one of his tumors turned cancerous. This happens in 10% of patients with type I neurofibromatosis (NF1), the so-called official name of the disease, which was diagnosed in Sandra and her children.
This is the most common hereditary disease that predisposes to the onset of tumors in humans, while in half of the cases the disease is hereditary. But such severe cases as Sandra's are not often recorded.
Sandra is so reconciled with her illness that she wears open swimwear on the beach and does not pay attention to the frightened or disgusted looks of others. Although she admits that she is sometimes very sad when she looks in the mirror or notices the looks of people on the street.
The worst of all was when she learned from the death certificate that the cancerous tumor of sarcoma that caused her son to die was due to neurofibromatosis inherited from his mother. Prior to that, doctors regularly denied the connection of these diseases to Sandra. After that, Sandra blamed herself for a long time, only the support of her husband and other children allowed her to cope with the trouble.
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Signs of neurofibromatosis can be seen immediately after birth. Usually these are several spots that have an unusual shade of coffee or milky. In severe cases, a scattering of small dense lumps-tumors appears.
In the 1970s, when Sandra was born, almost nothing was known about this disease. According to the woman, every day she woke up and found new small tumors on her body until they covered her from head to toe. Despite this, Sandra was active and cheerful. She was not afraid of meeting men and her tumors did not scare her husband Jose, with whom she had been together for 27 years, from her.
Their eldest son, 21-year-old Sandro, has small tumors on his body and they are growing. Their youngest son, 16-year-old Luan, has no tumors, only coffee and milk spots. Sandra teaches her children to accept themselves as they are, not to be ashamed of their bodies and not to consider themselves abnormal.
The only treatment for Sandra's tumors is surgical removal, but she has so many tumors that after treatment she will be covered with scars. Without treatment, tumors do not bring big problems for it; they are soft and painless if left untouched. But they are full of nerve endings and any manipulation with them brings a lot of pain.
Sometimes Sandra still starts to worry about this or that small tumor and she has to go to an operation with local anesthesia to remove it.