man playing guitar with granddaughter

Neurofibromatosis: Changing one man’s life

August 23, 2019 | UCI Health
enrique galvan with uci medical center team, including cristobal barrios

Enrique Galvan’s luck changed when he met UCI Health surgeon Dr. Cristobal Barrios.

Barrios was on a medical mission in Paraguay when the two men’s paths crossed.

Galvan suffers from a rare genetic disorder called neurofibromatosis, which causes large, heavy, benign tumors to grow on his nerve tissue.

The disease leads to what looks like extra skin hanging from his face, neck and head.

enrique galvan with dr mark kobayashiA physical and emotional toll

Although he had numerous surgeries in Paraguay, none of them were successful. Galvan, 27, had been bullied since childhood and was isolated as an adult.

He couldn’t do the things he most enjoyed: soccer and running.

The disease took a physical and emotional toll on him, and Barrios wanted to help.

UCI Health plastic surgeon Dr. Mark Kobayashi, who was also on the medical mission, felt that any surgery would be too extensive to do in Paraguay.

With the assistance of IMA Helps, a nonprofit that organizes medical missions, Galvan was flown to the United States.

'I feel like a brand-new person'

In June 2019, the surgeons and a team of nurses, anesthesiologists and other clinical staff volunteered their time for a 10-hour surgery.

When Galvan woke up, a literal weight had been taken off his shoulders: The surgeons removed about six pounds of tissue.

“I feel like a brand-new person,” he said.

enrique galvan with medical staff in paraguayReturning to Paraguay

But the surgeons’ work was not done yet.

In July, Barrios returned to Paraguay with IMA Helps so the team could complete Galvan’s surgery, removing more tissue from his neck and left ear.

“The surgery was a complete success,” says Galvan. “So much so that the next day, I was discharged from the hospital without any pain or problems.”

Galvan is now back home in Paraguay, feeling better and back to doing what he loves most, thanks to a lighter feeling in his head and shoulders.

“I am very grateful because everything turned out like I wanted it to.”

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