A MUM covered in thousands of bubble-like tumours has been left devastated after learning she’s passed the condition on to her three of her four kids.
Sandra De Santos, who lives in Rio de Janeiro, Brazil, has come to terms with her appearance.
The 53-year-old who bravely wears a swimsuit on the beach suffers neurofibromatosis type 1 (NF1).
The genetic condition affects the nervous system and skin, causing tumours to grow along the body’s nerves.
While the condition itself is relatively common, occurring in around one-in-three thousand births, such severe cases like Sandra’s are less common.
She said: “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.”
The tumours cover the 53-year-old’s body from top to toe, and devastatingly it has been passed on to three of her four children.
And sadly, Sandra’s second child died age six, from NF1 related problems.
Her son’s neurofibroma had turned cancerous, which is now known to occur in up to 10 per cent of neurofibromatosis type-1 sufferers.
Sandra 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’.
“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.”
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 1970’s, very little was known about the condition.
Everyday I woke up, I’d notice a new lump. I saw myself as being different
Sandra De Santos
She said: “Everyday I woke up, I’d notice a new lump. I saw myself as being different.
“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.”
By her mid twenties, Sandra’s torso was covered in small tumours, and they had started to grow on her arms and face.
It was then she met her husband to-be, Jose.
Sandra said: “He fell in love with my lumps. 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.”
Sandra and Jose’s 21-year-old son Sandro is still coming to terms with his increasing number of tumours.
A GENETIC CONDITION THAT CAUSES TUMOURS TO COVER THE BODY
Neurofibromatosis Type 1 is caused by a gene mutation and causes the growth of tumours along the nerves in the skin, brain and other parts of the body.
It affects around one in 25,000 people worldwide with varying degrees of severity.
Diana Haberkamp, executive director of Neurofibromatosis Midwest, said: “People could live with this condition if they weren’t treated so badly.
“Any tumour removals even if it’s only a few can make a person feel emotionally much better and happier about themselves.
“Some of our community have struggled to find work and have been told that they should be in the circus or freak show, which is horrible.
“Pain management is also one of main problems of NF, there are people who suffer due to tumours under the skin that aren’t visible, which can lead to limb loss and a loss of eyesight too.
“Specialist treatment is really important as no two tumours behave the same, they can wrap themselves around the organs and it takes a lot of experience to understand them.
“We dream of a day when we find a cure, but until then we want people have a concept of NF and understand issues caused by the condition.”
Their youngest, 16-year-old Luana, has several café au lait spots but as of yet, no tumours have developed.
Luana said: “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 wont care.”
To date, there is no cure for NF1, the only treatment Sandra has received is tumour removal.
Dermatologist, Professor David Azulay said: “The most important thing for Sandra is to live her life as normally as possible.
“With hundreds of tumours it’s hard to remove them all. But when she gets bothered by one, she has surgery.”
Sandra’s tumours aren’t painful but they’re made of a complex mass of nerve fibers, connective tissue and blood vessels, so it hurts to have them dug out. Surgery is performed using local anaesthetic.
PRAYING FOR A CURE Dad covered in THOUSANDS of bubble-like tumours can’t afford treatment because he has four kids to feed
As neurofibromatosis type-1 is such a complex genetic condition, research into finding a cure is still in the early stages.
Sandra said: “Of course I want to find a cure. Maybe not for me, but for my children.”
Dad Surinder Sharma, whose body is also ravaged by thousands of the tumuors, revealed he can’t afford treatment to remove them because he has four kids to feed.
While Habib Ullah Khan, from Pakistan, has been forced to live alone after his family shunned him due to the condition.
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