Sandra De Santos has thousands of bubble-like tumors on her body due to a rare disease called neurofibromatosis type-1. It’s a hard life, but she has spoken out proudly about how she deals with it.
The Rio de Janeiro native gets a lot of looks from people on the street, which doesn’t make things easy. Because the condition is genetic, three of her four children were born with it. Her second child died at the age of six due to complications with the disease. The rest of her children look up to their mother as an example of strength.
Neurofibromatosis is a rare disorder of the nervous system that affects the manner in which nerve cells form and grow, causing tumors on the healthy nerve tissue. Sometimes the tumors are benign, other times they can become cancerous. To learn more, click here.
In Sandra’s case, the tumors are benign, but there are thousands all over her body.
Sandra was unaware of any health problems until she hit puberty. This was in the 70’s, when nothing was known about the condition. Every day she would wake up and find a new lump in a different part of her body. By the time she was in her twenties, Sandra’s entire body and face became completely covered in tumors.
This didn’t stop her from dating and living a regular life. She even found a husband who saw past her tumors.
“He fell in love with my lumps,” she told Metro News UK. “He realized I was really unique and decided to go for it. He stayed with me. We’ve been together ever since. We dated, got engaged, then married, it’s been 27 years.’
Sandra and Jose have a 21-year-old son, Sandro, who is beginning to cope with his various body tumors. Their youngest daughter, Luana, doesn’t have any tumors yet, but shows several café au lait-colored skin spots. Sandra has taught her children not to let the disease get in the way. She has normalized it for her children, which has really helped them live a regular life thus far.
Currently, no NF1 cures exist except for tumor removal. Getting tumors removed causes a lot of pain, because they are made out of a web of nerve fibers, tissue and really small blood vessels. Having the tumors on the body, however, is painless.
Sandra hopes that finding a cure is still possible, not for her, but for her children.