Story By: William McGee, Sub-Editor: Marija Stojkoska, Agency: Newsflash
Netizens have praised this brave woman for taking to social media to show off her giant tumour to raise awareness for neurofibromatosis type 1 (NF1) – a genetic condition that causes growths along the nerves.
Karina Rodini, 31, was diagnosed with NF1 when she was one or two years old. The rare and incurable condition started off as pale, coffee-coloured patches all over her body.
The Parana, Brazil, native had a relatively normal childhood until the age of 12, when she underwent surgery to remove an eight-kilogramme (17.6-lb) ovarian cyst, which was unrelated to her condition.
She said: “My belly felt like it was pregnant. It was very big, but thank God the cyst was benign.”
Her NF1, however, worsened, and she would soon be getting her first related operation. She underwent her 10th last year.
Her operations were all performed by plastic surgeons, who removed the soft, non-cancerous tumours known as neurofibromas in the upper part of her legs.
She said: “The surgery I underwent in 2018 was very complicated. Every time I undergo surgery, I get one kilogramme (2.2 lbs) of tumour removed.
“A kilo off a 30- or 40-kilogramme (66-88-lb) tumour relieves me a little, but not much. I came out of surgery feeling rubbish and that everything was useless. I was really fed up.”
However, Karina swiftly found a new purpose in life – using social media to raise awareness of her condition, which is little known about, despite it affecting an estimated 80,000 of her compatriots.
She said: “At school I was called an elephant because they compared neurofibromatosis to elephantiasis.
“Other people tell me that they can’t get jobs because of prejudice. Therefore, we need more information on NF1 available at health centres, in hospitals and on the internet.”
Karina also created a WhatsApp group for sufferers of the condition, which now has over 100 members.
She said: “In the group, we share knowledge about treatments, exams and doctors’ guidelines.”
Karina’s condition has caused her to develop other health problems including scoliosis, optic pathway glioma, severe headaches, muscle pain, and problems with her thyroid and heart.
In addition to her operations, she is now undergoing chemotherapy.
Her Instagram page, titled ‘Overcoming Neurofibromatosis’, boasts 31,300 followers.
She captioned a recent post: “That’s right, the first drug for inoperable neurofibromatosis tumours has been registered in Brazil.
“I don’t even have the words to express everything I’m feeling. Long live science! More news soon.”
Instagram user Luiz Augusto commented: “You will soon be cured, believe.”