10/16/2012 10:22 am ET Updated Oct 16, 2012

Ed Port, 42, Featured On TLC's 'My Giant Facial Tumor' (VIDEO)

When Ed Port was born near Youngstown, Ohio, 42 years ago, he was like any other baby boy, but within a year, the differences became more obvious.

One side of his face stuck out more than the other and his mother took him to the doctor to find out if anything was wrong, according to his aunt, Susanne Dietrich.

"The doctor said it was just baby fat and not to be concerned. Children will have one side of the face larger than the other," she said. "Unfortunately, that wasn't the case."

It wasn't baby fat. It turns out that Port has Type-2 Neurofibromatosis, a disorder that causes tumors to grow uncontrollably along nerve shafts.

His story, as well as that of Savipat Kemkajit Chotpintu, a Thailland native, are documented in "My Giant Facial Tumor," a TLC special debuting Oct. 17.

Some people like Chandra Wisnu, the Indonesian man known as the "Bubble Skin Man," get bubble-like tumors erupting on their body.

Port's are concentrated on the left side of his face.

"I have a very large tumor that's covering my eye that's very obvious," Port said. "What's not obvious, underneath, is that it's also affected the bone around my eye socket."

Port is nearly blind in one eye and the tumor has eroded his jaw and pushed his ear so low on his face that it no longer functions.

There is no cure for Neurofibromatosis, but help may be on the way in the form of Chicago-based surgeon Dr. McKay McKinnon, who has had success helping people similar to Port by cutting off the tumor at the roots, reducing the amount it grows back.

Port has gone through many surgeries, but is hopeful he can get relief. He told the Chicago Tribune in July, 2011, his goals are simple.

"I'd like to get a pair of sunglasses that fit," he said. "And I'd like to get a ball cap that fits right."




My Giant Facial Tumor