Student with neurofibromatosis undergoes surgery to remove facial tumours

Tina Sayavic, 20, a student from Ljubljana, Slovenia, suffers from a rare condition known as neurofibromatosis type I.

The genetic disorder has caused tumours to form along the nerves of her face leaving it disfigured and lopsided.

During the past decade the food science undergraduate has undergone a dozen surgical procedures to limit the growth of the tumours and improve the structure of her face.

She said: “The neurofibromatosis started showing its first signs at the age of 9 or 10, but my parents already prepared me for this. They told me that I have this disease and that I will look a little bit different from the others.”

Despite the early warning from her parents Tina found it difficult to interact with new people as she was learning to adjust to the growths as well as the unwanted attention they garnered.

“The first contact with people is always difficult because they get scared of what I have. They think that I am, I don't know, contagious, that they will get the disease, but there are also people who accept me and spend time with me. But most of them still look at me sideways.”

“Sometimes it's hard to go into a new environment, or to a group of people who don't know you because you never know how they will accept you, but I try to force myself to forget about that and try to fit in as much as I can,” she added.

The unwanted attention has not caused her to become a recluse as she is often outside and lives an active social life.

One of Tina’s biggest passions in life is jogging as it helps to keep her mind off the condition.

Tina said: “Jogging is a form of relaxation for me. When I jog I forget about all worries, jogging relaxes me, it fills me with new energy.”

Since contracting the disease, Tina has undergone six surgical operations in her native Slovenia and five in London - her latest surgery sees her travel back to London with her mother Tatjana and step dad Jure.

Surgeons at Chelsea and Westminster Hospital in London worked on improving the shape and definition of Tina’s nose which lacked cartilage.

Their ingenious approach saw them take a small amount of cartilage from her rib and place it into her nose making sure to be careful as they carved it to size.

After the operation the avid jogger was left with a bigger nose in anticipation for future procedures to allow for surgeons to shave off the excess cartilage.

Although a success the latest surgery on her nose means that Tina will have to wait a few weeks to do the thing she can return to her passion for running.

She said: “As far as the operations go, I am happy that I can have them, but on the other hand they are stressful. However, if I couldn't have them, my condition could have been a lot worse.”

The high number of surgical procedures however have done little to dampen Tina’s spirit as the student has remained as upbeat as ever.

Mother, Tatjana said: “Tina is a very pleasant and warm person. She’s very strong. Compared to other children, healthy children, she doesn’t have an easy time and goes through a lot. So, I truly admire her.”

Viewers will be able to follow Tina’s brave quest to undergo treatment in a new series of Body Bizarre this Thursday (November 10). 

The episode also features 22-year old Rogers from Saint-Raphael, France, who has a  rare genetic bone disorder that has caused his bones to degenrate and 18-year-old Reshma from Mumbai, India, a young woman who survived an acid attack.

Tina’s story appears in Body Bizarre this Thursday, November 10 at 10pm, on TLC.