This Mom’s Entire Body Is Covered In Bubble-Like Tumors

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Neurofibromatosis (NF) is a genetic neurological disorder that can affect the brain, spinal cord, nerves and skin and Sandra De Santos knows all about the condition that allows tumours to grow along the body’s nerves and on the skin.

The 53 year old Brazilian suffers from the condition and has had benign bubble like tumors growing all over her body since she was younger. However, it wasn’t until she began going through puberty before she realized she had health issues.

In other cases, signs can be noticed from birth which can include the appearance of benign lumps and the skin having pigment problems such as pale or coffee color patches.

The genetic condition affects around one in three thousand births with differing levels of severity. It is a somewhat common condition that has been passed on to 3 of her 4 children. Nevertheless, when Sandra was first diagnosed in the 1970’s there was very little information about it.

Sadly, her son died from the condition when he was 6 years old after his NF had become cancerous. Understandably the mother felt guilty, asking the doctors if her son’s death was her fault as his death certificate read “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. There are moments when I feel sad to see myself in the mirror, or to notice people staring at me on the street, but my family has always supported me,” Sandra says.

Despite her physical appearance, Sandra learned to love her body. She didn’t let her condition stop her from doing the things she wanted and even started dating at 17.

By the time she was in her mid-20’s, Sandra’s torso was covered in the small tumors and they had started to develop on her arms and face. Then she met Jose, her now husband of 27 years.

“He fell in love with my lumps. 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 said.

Sandra and Jose have had years to come to terms with her condition, but their son Sandro, 21, is just coming getting to grips with his increasing number of tumors. Luana, their youngest daughter at 16 years old who also suffers with NF has lots of café au lait spots but no tumors yet.

She says, “I have the same disease my mother does, but it never gets in my way. Mum taught me not to care, to see it as something normal. If I become like her, I won’t care.”

Although the tumors are not painful as such, their removal is quite painful due to the fact that they are made up of a complex mass of nerve fibers and tiny blood vessels. In Sandra’s case she has had some of her tumors removed and that is the only treatment she has been receiving.

Researchers are currently in the early stages of finding a cure for NF but as of yet there’s no cure known.  Going forward in life, Sandra has said “Of course I want to find a cure. Maybe not for me, but for my children.”

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