James O’Neal compares himself to John Hurt’s character in the 1980 film “The Elephant Man.”
A genetic disease known as neurofibromatosis has left O’Neal’s face horribly disfigured, but several surgeries may be able to reconstruct his facial features.
Although it was at one time believed that Joseph Carey Merrick, the subject of the 1980 film, also suffered from neurofibromatosis, he actually suffered from Proteus syndrome, a congenital disorder that causes skin overgrowth and atypical bone development, often accompanied by tumors over half the body.
Gina Agiostratidou, a biologist and scientific program manager for the Children's Tumor Foundation in New York, told FOXNews.com that there are three types of neurofibromatosis: NF1, NF2 and schwannomatosis.
All three are caused by deletions or mutations of certain genes. NF1, which is the type suffered by O'Neal, is characterized by large benign tumors that grow on the cranial nerves, face, brain and spinal cord. The disease occurs in about 1 out of every 3,000 births and is more prevalent than cystic fibrosis, according to the Children's Tumor Foundation.
NF2 is much rarer, occurring in 1 out of 25,000 births. It causes tumors to grow on the cranial and spinal nerves, as well as both auditory nerves. It often results in hearing loss beginning in the teens and 20's.
Researchers know very little about schwannomatosis. It occurs in about 1 out of every 40,000 births and symptoms differ greatly among sufferers, according to the foundation.
O’Neal, of Kirkland, Wash., said he knows his deformity is shocking — but he refuses to hide like other people with his disorder.
“I just tell people this is who I am, it’s the way I am,” O’Neal told KOMONews.com. “If you don’t like me, you don’t like me.”
But O’Neal — who works as a cashier at Kingsgate Safeway — is well-liked by his customers.
In fact, his regular customers said O’Neal is an “inspiration” and they have started raising money for his surgeries, since insurance likely will not cover the full cost.
“He is an amazing man, and we love him,” said customer Aubrey Richins. “He’s the kind of person that makes your day.”
At the moment, there is no cure for neurofibromatosis, Agiostratidou said.
"There are so many different manifestations of the disease," she explained. "Surgery is usually a last resort because it does affect the nerves and removing the tumor can create paralysis of the nerve. Currently, the treatment includes chemotherapy (and then) surgery, and we are working on clinical trials for different medications, but it is still very early for us."
Contributing: Marrecca Fiore, FOXNews.com health editor