James O’Neal compares himself to the Elephant Man, painfully aware that his deformity shocks people. Neurofibromatosis has left his face horribly disfigured — but that could soon change with surgeries to reconstruct the Kirkland, Washington man’s face.
“I just tell people this is who I am, it’s the way I am. If you don’t like me, you don’t like me.” he said.
James has lived with his disability since birth, but the tumors stopped growing when he did, and surgery would rid him of the deformity for good.
While many afflicted with this disease would rather hide and become a recluse, for 7 years James has proudly worked the cash registers at the local Safeway store in Kirkland.
What to shoppers there say? His customers don’t like him — they absolutely love him and call him an inspiration.
“He is an amazing man and we love him. He’s the kind of person that makes your day.” said customer Aubrey Richins.
However, all of them say they were stunned at first when they saw his disfigured face. “I have to admit I was a little taken back, but when I walked through his line I felt this spirit come over me, this man is out here, not hiding.” said Cindy Peay.
James O’Neal’s story inspired Katie Knopf — a shopper at the store who saw him for “the person he is inside” — to launch a massive charity campaign to give him a new face. Being a preexisting condition that he was born with, his insurance company won’t cover the costs of difficult and extensive surgeries or recovery.
Katie started a website asking for donations for reconstructive surgery. “We want to change his life.” she said. Her ardent efforts have motivated James’ employers at Safeway to kick in the first $10,000. As of this writing, her website reports to have received more than $30,000 in donations.
“James is our employee, he is one of us and we absolutely think the world of him.” said Cherie Myers, Safeway’s director of public and government affairs. “This is just a bonus, this our bonus to him. He never asked for it, he’s never said ‘woe is me.’ He’s proud to be who he is.”
“James will always be the person he is inside. I’m hoping with this he’ll have a new lease on life.” said Katie.
“It makes me feel honored and proud.” said James, stunned to learn his employer is not only donating $10,000, but also committed to helping him deal with the insurance paperwork.
In July, Safeway stores in 4 states will launch a 3-week Canister Campaign to collect donations for James.
James “Neal underwent surgery last month to remove a huge mass of tumors that had disfigured his face for nearly 30 years and became a “new man,” thanks to mass support from locals and online well-wishers which raised $240,000 in contributions.
“Looks good, I like it. It’s perfect.” O’Neal said, after seeing his face without bandages or stitches. “Perfect. Oh, yeah!”
“I’ve never had that kind of support before.” O’Neal added. “I’m overwhelmed. I didn’t think it would be this quick.”
O’Neal marveled at his left ear after the surgery which was in its right place, no longer dangling from the mass of tumors, as well as his straightened nose and chin.
Dr. Peter Neligan, director of the Center for Reconstructive Surgery at the University of Washington Medical Center, performed the operation free of charge.
But the surgery was risky. Twice Neligan had to stop the operation because O’Neal was losing too much blood — 28 units of blood were needed during the operation, although the body only holds 8 units.
Rather than receiving a full-face transplant, O’Neal opted for a less radical operation to “debulk” his tumors, which removes most of the tissue but leaves some behind.
He will undergo a second surgery in another 6 months to remove tumors from his neck and minor procedures every 5 years should keep further tumor growths from engulfing his face once again.
James has taken the events of the past year in stride although he sometimes can’t believe how strongly the local and global community came together to help him.
“It’s not going to change my personality or nothing.” O’Neal said. “I think I inspire a lot of people just being out working.”
Neurofibromatosis and Reggie Bibbs
Reggie Bibbs’ face is so disfigured from Neurofibromatosis that he’s spent most of his life shut in so he wouldn’t have to face people. When he did venture out, some stores went to the lengths of locking their doors to him when he attempted to enter.
He says he doesn’t like being referred to as the Elephant Man since he doesn’t suffer the same affliction.
“What really hurts is if someone screams or if they laugh.” says Reggie.
But one campaign and 2 words ‘Just Ask!’ seems to have erased that reaction. This courageous man started his own website and a T-shirt campaign sporting the Just Ask! logo 2 years ago when he grew weary of people staring at him.
China’s Elephant Man
Huang Chuncai — otherwise known as China’s Elephant Man — suffers from the world’s most extreme recorded case of Neurofibroma, a steadily growing facial tumor that left him in continual pain for more than 30 years and forced him to withdraw from society at 10 years old to live his life as a recluse.
A massive tumor that hung down from his face had a perimeter of 38.2 inches (97 centimeters), and measured 22.4 inches (57 centimeters) in length, completely obscuring his features.
At 31 years old, Huang said he had never had a happy day in his life.
His facial tumor became noticeable when he was 4 years old and grew bigger ever more rapidly as he grew older, blocking his left eye, pushing his left ear to shoulder level, knocking out his teeth and deforming his backbone.
Neurofibromatosis had crippled Huang — who was merely 4.5 feet (1.35 meters) tall — with difficulties in breathing, eating, hearing and seeing, aside from the extreme discomfort, but he underwent surgery nearly a year ago in hopes to change all that.
The operation at Fuda Cancer Hospital in the southern Chinese city of Guangzhou for the 32-year-old from a remote village in China’s southern province of Hunan, took more than 10 doctors and nurses in the hour-long surgery to remove 33 pounds (15 kilos) from what was originally a 55.7 lb (23 kilo) tumor on his face.
In January 2008, Huang Chuncai underwent a second operation to remove another 9.9 lb (4.5 kilo) tumor from his face in hopes that it will transform his future.
China’s Elephant Man Huang Chuncai
Joseph Merrick Elephant Man
Neurofibromatosis was once thought to be the sole cause behind the deformities of Joseph ‘The Elephant Man’ Merrick. While that theory is likely incorrect, it’s easy to see why the disease was pegged. Many researchers still believe Merrick had both Neurofibromatosis and Proteus as his deformities are not typical of either affliction.
Here is the beginning of my post. And here is the rest of it.
Eddie Newton, the gentleman in this video has a serious form of Neurofibromatosis. Lesser types manifest in small knots and skin tags.
This video predates the discovery of Joseph Merrick’s proper name — Joseph, not John — as well as his diagnosis of Proteus Syndrome, a congenital disorder that causes skin overgrowth and atypical bone development, often accompanied by tumors over half the body.
Joseph Merrick and Eddie Newton - Elephant Man