Living with Neurofibromatosis
For 29-year-old Ana Rodarte, going out in public was once considered torture. "There has been several times when little kids see me and they'd just start crying," she says. "It's very hard emotionally to have the life I've lived. Growing up, I built up a wall. I didn't want people to see how hurt I was, because it would make me vulnerable."
Ana lives with an incurable, disfiguring disease called neurofibromatosis (NF). The genetic disease affects 1 in 3,000 people and causes tumors to grow along nerves. The tumors can grow anywhere on or in the body. The disease is sometimes referred to as elephant man's disease, but this term is highly offensive to those in the NF community.
For the first time, Ana is telling her story to help people understand what it's like to live with NF.
Ana lives with an incurable, disfiguring disease called neurofibromatosis (NF). The genetic disease affects 1 in 3,000 people and causes tumors to grow along nerves. The tumors can grow anywhere on or in the body. The disease is sometimes referred to as elephant man's disease, but this term is highly offensive to those in the NF community.
For the first time, Ana is telling her story to help people understand what it's like to live with NF.
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