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Woman refuses to hide her 40kg tumours

Such an inspiration - by Jacqueline Mey
  • 05 Sep 2019
Woman refuses to hide her 40kg tumours
Source: GoFundMe / Karina Rodini Neurofibromatosis treatment

28-year-old Karina Rodini from Sao Paolo, Brazil was born with small freckles on her leg.

At age two the markings began to change, and she was eventually diagnosed with neurofibromatosis type one.

Causing tumours to form on nerve tissue this genetic disorder can affect anywhere in your nervous system, even your brain.

For Karina the disease seems to be localized around her upper leg and hip area.

However, growing up the tumours rapidly grew until now they weight over 40kgs.

I Refuse To Hide My Giant Tumours

Now she is worried that they could spread into other parts of her body.

Impacting the left side of her body, Karina has lost vision out of her left eye and has continual medical issues including scoliosis due to the sheer weight of the tumours.

At school she was heavily bullied and tried to hide the tumours under baggy clothing.  

For years she would refuse to have her photo taken.

Now struggling to find clothes to conceal it, Karina is she is speaking out trying to change her mindset and raise awareness.

Sharing with the world her incredible bright and bubbly personality Karina is not letting her condition hold her back. 

superandoaneurofibromatose View Profile
1,663 likes - View Post on Instagram
Boa tarde,hoje resolvi fazer um vídeo para mostrar um pouco mais dessa doença. Não é nada fácil conviver com ela,mais aos poucos tudo se ajeita,hoje fazem 2 meses e 7 dias que fiz uma cirurgia,foi retirado aproximado 1kg de tumor. Sempre é retirado muito pouco devido a muitos vasos sanguíneos e a perda de sangue. Estou em campanha para me consultar com especialistas e ter uma vida melhor. #neurofibromatosis #neurofibromatose #neurofibroma #neurocirurgia #neurologia #neurofibromatosetyp1 #ortopedia #ortopedista #dermatologista #doencasraras #tumores #cirurgia #cirurgiaplastica #vakinha #vakinhaonline #vakinhavirtual #doacoes #endnf #brasil #ministeriopublico #ministeriodasaude

After hundreds of visits to doctors and surgeons she is desperate to remove the mass but because it is so large she would need to undergo multiple surgeries.

But many specialists are turning her away because of the high risks associated with putting her under the knife numerous times.

Having already undergone seven surgeries the tumours continue to grow back.

superandoaneurofibromatose View Profile
587 likes - View Post on Instagram
Boa Tarde ❤️ Hoje consultei com o Dr LOR,especialista na #neurofibromatose. Depois de pesquisar muito e ler vários artigos sobre a doença,não tive dúvidas em vir para BH,para tirar todas as minhas dúvidas. Tirei varias duvidas,mais algumas eu já sabia a resposta,a principal é que não tem como eu retirar todo esse tumor de minha perna. Isso todos os médicos que eu vou me falam,por conta do risco de sangramento devido aos vasos sanguíneos. Mais mesmo assim eu gosto de perguntar,esperança é a ultima que morre rsrs. Sobre a consulta que tive hoje,foi bem proveitosa,o Dr me disse algumas coisas que aumentaram as minhas esperanças. Irei testar um remédio para diminuir o crescimento do tumor,e que também poderei fazer a cirurgia em partes. Dr Lor irá passar o meu caso a um cirurgião para ver a opinião dele também. Estou confiante que estou no caminho certo,e não irei desistir dos meus objetivos e sonhos,por mais que a neurofibromatose não tenha cura,eu vou lutar para ter uma vida melhor❤️ Agradeço muito por todas as pessoas que me ajudaram a estar aqui,e que estão torcendo por mim ❤️ Muitíssimo Obrigada. Dr Luiz é um excelente profissional,ele é muito querido. Aproveitem para conhecer o Blog dele,onde vocês podem tirar muitas dúvidas também.

Unable to find a job because of the way she looks she hopes to raise enough money for proper treatment.

There is no cure for NF1 but it can be treated through medication and surgery.  

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Jacqueline Mey
Jacqueline Mey
Jacqueline is a Features Writer for that’s life! magazine. Previously working at Prevention, she has published works across Bella, Closer, Take a Break, Real People and that’s life! UK. She is also the host of Girlfriend’s Beauty Boss Podcast.

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