Mother Covered in Thousands of Bubble-Like Tumors Reveals Husband Fell in Love with Her Lumps

A mother covered in thousands of bubble-like benign tumors says she has learned to love her [...]

By Libby Birk

A mother covered in thousands of bubble-like benign tumors says she has learned to love her appearance and is "proud" to wear a swimsuit on the beach. She said that when she met her husband-to-be, he "fell in love" with her bumps.

Sandra De Santos says she has lived with type 1 neurofibromatosis (NF1), a genetic condition that affects the nervous system and skin, since she was a teenager. At first, coffee-colored spots, called cafe au lait spots, started showing on the Rio de Janiero native. Then they progressed into benign lumps known as neurofibromers.

When she was diagnosed in the 1970s, not much was known about the condition. Now, researchers know that it's relatively common and affects about one in every 3,000 births — but differs in degrees of severity. De Santos says she didn't let it affect the way she lived her life.

"Everyday I woke up, I'd notice a new lump. I saw myself as being different," she told the Daily Mail. "Despite this, nothings stopped me from doing things. I always dated. I started dating at 17, and I dated a lot. I kissed a lot. I went to the balls a lot."

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By her mid-twenties, her torso was covered in lumps, and they had started to appear on her arms and face as well. That's when she met her future husband, Jose.

"He fell in love with my lumps," she said. "He realised 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."

Now, the tumors cover De Santos' body head to toe. Her condition has been passed on to three of her four children, and sadly, one of her sons died from it when he was just six years old. He had neurofibromatosis that turned cancerous, which happens in about 10 percent of those diagnosed with NF1.

"I always asked the doctors if it was due to my condition, they said it wasn't related to it," De Santos said. 'But when he died I read on his death certificate: 'sarcoma due to neurofibromatosis'."

"I became quite sad for a long time. I have three kids, two have the condition. But they look to me as an example, so I keep going," she said.

De Sandros' oldest, 21-year-old Sandro, is still coming to terms with his increasing number of tumors. Her youngest, 16-year-old Luana, has several cafe au lait spots, but no tumors.

"I have the same disease my mother does, but it never gets in my way," Luana said. "Mom taught me not to care, to see it as something normal. If I become like her, I won't care."

Currently, there is no cure for NF1. The only treatments De Santos has had done are tumor removals. While the tumors are not painful in everyday life, they are made up of a complex mass of nerve fibers, connective tissue and tiny blood vessels — making them painful to remove.

Although research of the genetic disorder is still in its early stages, De Santos is hopeful that a cure will one day be discovered.

"Of course I want to find a cure. Maybe not for me, but for my children," she said.

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