Woman with thousands of bubble tumours on how she copes with rare condition | Metro News

    A woman with a rare condition that leaves her with bubble-like tumors on her body has spoken out about how she has come to terms with the disease.

    sandra de santos, from rio de janeiro, said she often finds people staring at her or feeling sad when she sees herself in the mirror.

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    She suffers from neurofibromatosis type 1, a genetic condition that affects the nervous system and skin in many ways. it is relatively common, currently occurring in approximately one in 3,000 births, but in varying degrees of severity.

    The condition is genetic and three of her four children also have it. The second child of hers died at the age of six as a result of problems associated with it.

    She said: ‘I always asked the doctors if it was due to my condition, they said it was not related to it.’ but when she died I read on her death certificate: ‘sarcoma due to neurofibromatosis’.

    ‘I was pretty sad for a long time. I have three children, two have the condition. but they look at me as an example, so I keep going.”

    sandra and her parents had no idea she had any health problems until she hit puberty.

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    Signs of the condition may appear at birth and include the skin having several pale brown spots called café-au-lait spots, or the appearance of benign lumps, known as neurofibromeres.

    When Sandra was diagnosed in the 1970s, very little was known about the condition.

    she said: ‘every day i woke up, i noticed a new lump. I saw myself as being different. despite this, nothing prevented me from doing things. I always went out I started dating at 17, and I went out a lot. I kissed a lot I went to dances a lot.’

    By her mid-twenties, Sandra’s torso was covered with small tumors, and they had begun to grow on her arms and face.

    That’s when she met her future husband, José.

    sandra said: ‘he fell in love with my bulges. she realized that I was really unique and decided to give it a try. she stayed with me. we have been together ever since. we dated, we got engaged, then we got married, it’s been 27 years.”

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    sandro, sandra and jose’s 21-year-old son, is still dealing with his growing number of tumors. His youngest, Luana, 16, has several café-au-lait spots, but no tumors have developed so far.

    luana said: ‘i have the same disease as my mother, but it never gets in my way. Mom taught me not to worry, to see it as normal. if I become like her, I won’t mind.’

    To date, there is no cure for nf1, the only treatment Sandra has received is removal of the tumor.

    Dermatologist Professor David Azulay said: “The most important thing for Sandra is to live her life as normally as possible. with hundreds of tumors it is difficult to remove them all. but when one bothers him, he has surgery.”

    sandra’s tumors are not painful, but they are made up of a complex mass of nerve fibers, connective tissue, and tiny blood vessels, so they are painful to remove. the surgery is performed under local anesthesia.

    Because neurofibromatosis type 1 is such a complex genetic condition, research to find a cure is still in its early stages.

    sandra said: ‘of course I want to find a cure. maybe not for me, but for my children.”

    body bizarre is on Thursdays at 10 p.m. m. in tlc uk.

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