Man with 'Elephant Man's' disease stays positive amid stares, physical pain

RIVERSIDE, Calif. -- He's considered a modern day Elephant Man, going through life with deformities that have kept him from getting a job and living a normal life.

Now, as he's about to turn 50 years old, friends have set up a GoFundMe page for a much needed surgery.

Just like a lot of people, Eddy Newton's big hobby is music.

"My favorite bands, Foreigner, Journey," Newton said. "I'm a huge Garth Brooks fan, Carrie Underwood."

It's a joy he can share with all of his friends. "It's a passion that we all seem to enjoy together."

But there's something Newton has that most others do not. A condition so severe, only 10,000 people in the world share it.

"I have a rare disorder, and it's called neurofibromatosis," Newton explained.

This condition is more commonly known as the "Elephant Man's" disease.

"Part of this disease is development of benign masses that can be disfiguring," said Dr. Benjamin Bradford, from Loma Linda University Medical Center.

And something else Newton will never escape: "I get double stares, I get the whispers."

Newton had a tough childhood. He said his father left the family when he was 7 and that he was mocked and ridiculed by other kids, with constant name-calling.

"Jawbreaker, freak, two-faced, elephant boy," Newton said.

Later in life, his self-esteem continued to plummet.

"I joined a circus, a traveling circus," Newton said, since he could not find any other job. "I was a sideshow freak."

"When he went out in public he had to wear a hood on his head so they wouldn't see him," Newton's mom said. She has a less severe form of the disease.

For Newton, the side effects include constant migraines.

He has had over 30 major operations, which left him with no right ear, few teeth, a sagging eyelid, and a severely disfigured face.

On Tuesday, Dr. Bradford will perform another major surgery to remove the tumor from his chin, revise the jawline, reduce facial and neck scarring and enhance his breathing.

"We will be doing an operation to remove some of the excess skin as well as transfer fat from his abdomen to areas of the face that need more volume in an effort to improve his appearance and give him better symmetry," Dr. Bradford said. "He will likely need further operations to optimize his appearance."

"It will also help me have a more defined chin, but it will also help me breathe a little easier," Newton said.

Neurofibromatosis can also be life-threatening. Doctors told Newton he wasn't supposed to live past age 8. But he's now almost 50. And just as he likes to share his love of music, he shares a story of inspiration as well.

"I stayed strong with my faith, but also my mom," Newton said. "She's always taught me to stand straight up, back straight, shoulders back, chin up, walk with confidence, and I've always done that."

"I couldn't be prouder, he's an amazing young man," Newton's mother said.

Through it all, he said he's happy. "I'm happy because there's only one me, nobody could be me, but me."

Newton lives a very modest life with his mother in a mobile home.

But his friends said he's the first one to volunteer to help whenever others are in need. He volunteered for four months in Texas helping Hurricane Katrina survivors. For over 15 years, he has volunteered helping children in an orphanage in Tijuana, Mexico.

Recently, he founded a non-profit called "Eddy Unmasked," devoted to helping teens cope with self-esteem issues.

He has shared his life story with high school students throughout Southern California and said he wants a chance to do even more of that.