Karina Rodini Brazilian woman with neurofibromatosis that caused giant tumors to grow Date of Birth: 01.01.1991 Country: Brazil

1. Karina Rodini: A Life Deformed by Neurofibromatosis
2. The Impact of Neurofibromatosis
3. A Long History of Surgeries
4. Difficulties in Daily Life
5. Job and Relationship Challenges
6. The Search for Treatment in India
7. Neurofibromatosis: A Complex Condition
8. The Need for Financial Support

Karina Rodini: A Life Deformed by Neurofibromatosis

Karina Rodini, a 28-year-old Brazilian woman, has been living a secluded existence due to the devastating effects of neurofibromatosis (NF), a genetic disorder that has caused her body to develop massive tumors on her legs and hips.

The Impact of Neurofibromatosis

Neurofibromatosis has robbed Karina of a normal life. The tumors have left her unable to work, isolated her socially, and rendered her a virtual prisoner in her own home. Her mother has had to give up her career to care for Karina, who has become an outcast in her own neighborhood.

A Long History of Surgeries

Despite undergoing eight surgeries to remove kilograms of excess tissue, Karina's condition has only worsened. After an operation at a public hospital in October 2018, her legs allegedly doubled in size, leaving her unable to walk.

Difficulties in Daily Life

Karina struggles to find clothes that fit, sleeps fitfully due to discomfort, and experiences worsening eyesight. Diagnosed with neurofibromatosis at the tender age of two, her condition spiraled out of control after a 9-kilogram cyst was removed when she was 12.

Job and Relationship Challenges

"It was difficult to find a job because sometimes I needed to take time off to go to the hospital," Karina said. "Nowadays, I wouldn't get a job just because of the way I look. I'm always being stared at."

Karina's personal life has also been affected, as her disfigured appearance has made it difficult to find a romantic partner.

The Search for Treatment in India

Karina has sought medical advice from doctors in Sao Paulo and Curitiba. While she found a surgeon willing to operate, the procedures removed only about a kilogram of tissue at a time due to the risk of fatal blood loss.

Discouraged by the lack of progress in Brazil, Karina has found a hospital in India that is willing to remove the entire tumor. However, the waiting list in Brazilian hospitals is long, and no local doctor has yet agreed to perform such a risky procedure.

Neurofibromatosis: A Complex Condition

Neurofibromatosis type 1 (NF1) is a common inherited disorder characterized by the growth of neurofibromas, benign tumors that develop from nerve coverings. In addition to neurofibromas, the condition can cause bone problems, changes in the iris of the eye, and other complications.

The Need for Financial Support

Karina currently cannot afford a CT scan, let alone the three million rupees (US$40,000) needed for the surgery in India. Her sister has launched a GoFundMe page, hoping for the generosity of strangers. As of February 7, 2019, only $339 of the $40,000 goal has been raised.

Despite her challenges, Karina remains hopeful. "I am a visionary person, an optimistic person," she said. "I'm sure that, with the help of people, I will find the right doctor and raise the necessary money for my treatment, wherever it may be in the world."