Karina Rodini is 28 years old and from Sao Paolo, Brazil. She likes to socialize with her family, be outside and experiment with different make-up techniques.
Sounds like an ordinary 28 year old, but for Karina, life has become anything but ordinary.
She suffers from an unusual disease that causes large tumors to grow on her legs. The disease has made it difficult for her to move. She has also struggled to find work.
For a long time Karina was depressed and let her condition take over her life.
But now she has taken a drastic decision – Karina refuses to hide more.
She decided to share her story to inspire others who struggle with this condition and spread the word that you should not be ashamed of who you are.
Karina Rodini was diagnosed with neurofibromatosis type one, or NF1, when she was only two years old.
But it wasn’t until her teenage years that the disease took hold. It began as a few marks on her skin but then she developed large tumors on her leg.
She developed these growths while at school and as you can imagine some were not kind to her. She suffered exclusion which she has had to live with for almost 15 years.
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Today, the tumors have grown so large that they weigh over 88 pounds and although Karina has undergone seven operations to remove tissue, they continue to grow.
“My fear is that the disease never stops growing, and it will reach a point when I wouldn’t know what to do,” says Karina, according to the Daily Mail .
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The tumors have mainly affected her left side and she even struggles to see out of her left eye.
During each operation only around two pounds of flesh can be removed because she loses so much blood.
Karina says her legs have doubled in size since her operation last October.
She struggles to find clothing to fit and struggles to sleep at night as she’s so uncomfortable.
Neurofibromatosis is a genetic disorder that causes tumors to grow on nerve tissue.
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Because of her illness, Karina has experienced a lot of bullying and exclusion in her life.
“I learned how to deal with prejudice. Before I used to suffer more. Now I deal with it better. Prejudice is always going to exist. “ she said, according to the Daily Mail.
Karina said she has worked since the age of 16 but was fired from her last job because of the many doctors appintments she had to attend.
Since then she has struggled to find work.
“Now, nobody wants to give me a job just because of the way I look. Everywhere I go people stare at me.”
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There is currently no cure for NF1. But the disease can be treated with surgeries, medications, physiotherapy and psychological support.
Karina says she hasn’t found anyone who specialises in treating the disease in her home country of Brazil so is planning to travel to India to see experts.
Karina’s mother says despite it all her daughter remains optimisitic.
“Karina is a very active girl, she enjoys life, she enjoys putting on make-up, going out, she likes playing with children.”
As her tumors grew Karina stopped wanting pictures taken or exposing herself or being recorded.
But now she is trying to change all that.
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“I try to expose myself more, especially because there are many people who have the same disease who have reached out to me.”
Karina hopes that she can help others with NF1 by speaking publicly about her own experiences.
‘You don’t have to stay at home hiding and being depressed because you have a disease, you don’t have to think there is no solution, because there is.’
Find out more about this incredibly brave woman in the clip below.
Please share this article to pay tribute to this courageous lady who wants to help others deal with similar conditions.
