By Rafaela Kuznec @RafaelaKuznec
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Videographer / director: Giovanni Bello
Producer: Rafaela Kuznec, Ruby Coote
Editor: Marcus Cooper
Karina Rodini, who resides in Curitiba, Brazil, was born with a rare disease called neurofibromatosis type I that resulted in tumours to form on nerve tissue.
The 28-year-old was diagnosed with the condition at the age of two.
The disease progressed in her adolescence years and the tumours developed gradually on Karina’s legs and hips.
Karina underwent countless surgeries and procedures in order to remove tumours that kept growing back bigger each time.
Karina told Barcroft TV: “When I was a child I only had little dark moles, the disease evolved when I was 14 -15 years old.
“And it went on growing, growing, growing and growing… “
She said: “My fear is that the disease never stops growing, and it will reach a point when I wouldn’t know what to do.”
Karina has experienced a lot of bullying throughout her life because of her disease.
She said: “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.
“From various people, with various problems, you know.
“It can be with mine, with a person who has darker skin or a disabled person…”
Karina also said that her tumours, that weigh around 4 kg, caused her a lot of health problems - she struggles to walk and suffers from severe scoliosis.
Karina said: “My left side, it is completely affected - I can’t see with my left eye.”
The 28-year-old is hoping to remove the tumours and said: “I need to do surgeries, to go on removing as much as I can and as soon as possible so it doesn’t spread out more throughout the body.
“It can grow in other parts of the body – internally and externally.
“So it is a surprise box.
“We never know what is going to happen with neurofibromatosis.”
Karina’s condition left the young woman unable to work.
She said: “I started working at 16 years old and worked since then, but because of many visits to doctors, surgeries, and exams, I was fired from my previous job.”
She added: “My family always accepted me the way that I am.
“They learned to deal with the situation.
“My mother, accompanying me in doctors, exams, consultations, trips.”
According to the NHS, there is currently no cure for neurofibromatosis.
Treatment involves surgery, medication, physiotherapy, psychological support and pain management.
Karina said that in Brazil there are not many doctors specialising in neurofibromatosis, therefore, she hopes to get treatment abroad.
Karina’s family set up a GoFundMe page in hopes to raise funds for treatment that could change Karina’s life.
Karina’s mother, Fatima Mohamad Abou Ali, said that when Karina’s disease progressed at that time their family was not aware of how it might affect Karina.
Fatima told Barcroft TV: “We didn’t know what was it.
“The doctors didn’t know how to explain it well, so I thought it was like moles that could fade.
“We saw that her moles were getting bigger and then we thought we had to get more information, to do research, to see what could be done.”
Fatima said that despite Karina’s condition, her daughter has an optimistic outlook on life.
She added: “Karina is a very active girl, she enjoys life, she enjoys putting on make-up, going out, she likes playing with children.”
Karina said: “In this last year when the disease has affected me more, I felt shy of exposing myself, of taking pictures, of being recorded.
“But now I try to overcome my insecurities.
“I try to expose myself more, especially because there are many people who have the same disease who have reached out to me.”
Karina believes that talking publicly about her disease she can help others who suffer from similar conditions and show them that despite the disease, people can still lead a normal life.
Karina said: “You have to show yourself, you have to talk about the disease, you don’t need to be embarrassed.
“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.”