MODERN DAY ELEPHANT MAN HEROES! (from : www.lifeinthefastlane.ca)

Joseph Merrick — known as the Elephant man — shocked the world in the 1800’s with his disfiguring disease. Now known as Neurofibromatosis — a genetically-transmitted disease in which nerve cells grow massive tumors occurring in as many as 1 in 3,000 children — several modern day ‘Elephant Men’ have brought this disorder to the limelight, becoming today’s heroes, with their tales of hope, determination, inner strength, spirit and inspiration. Warning, images are highly graphic.

James O\'Neal Elephant Man 1
Photo KOMO News

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.

James O\'Neal Elephant Man 4

James O\'Neal Elephant Man 9

James O\'Neal Elephant Man 14
Photo Katie Knopf

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 O\'Neal Elephant Man 11

James O\'Neal Elephant Man 12

James O\'Neal Elephant Man 13

“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. You can also contribute through KOMO News.

James O’Neal Elephant Man

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.

Reggie Bibbs Elephant Man 1

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.

Reggie Bibbs Elephant Man 8
Photo Reggie Bibbs

Reggie Bibbs Elephant Man 3

Reggie Bibbs Elephant Man 5

Reggie says he hasn’t had a negative response since coming out of isolation a year ago.

Visit the Reggie Bibbs website to learn more.

Reggie Bibbs Elephant Man 6
Photo Reggie Bibbs

Reggie Bibbs Elephant Man 7
Photo Reggie Bibbs

Reggie Bibbs

An interview with Reggie Bibbs on the Debra Duncan show is well worth the watch if you have the time to spend, or come back when you do.

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.

Huang Chuncai Elephant Man 3
Photo Reuters

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.

Huang Chuncai Elephant Man 1
Photo Metro

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

Huang Chuncai After First Surgery 2007

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.

Joseph Carey Merrick Elephant Man 3

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

What is Neurofibromatosis
Neurofibromatosis is a genetically-transmitted disease in which nerve cells (Schwann cells) grow tumors (neurofibromas) that may be harmless or may cause serious damage by compressing nerves and other tissues.

The tumors may cause bumps under the skin, colored spots, skeletal problems, pressure on spinal nerve roots, and other neurological problems.

There are 3 types of neurofibromatosis — NF1, NF2 and Schwannomatosis — Gina Agiostratidou, a biologist and scientific program manager for the Children’s Tumor Foundation (CTF) in New York, told FOX News. All 3 are caused by deletions or mutations of certain genes.

NF1 — 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 CTF.

NF2 is much rarer, occurring in 1 out of 25,000 births, causing tumors to grow on the cranial and spinal nerves, as well as both auditory nerves, often resulting in hearing loss beginning in the teens and 20’s.

Researchers know very little about Schwannomatosis which occurs in about 1 of every 40,000 births and symptoms differ greatly among sufferers.

Neurofibromatosis is inherited through a dominant gene, which means that if a child gets one gene for neurofibromatosis from one parent, and a normal gene from the other parent, that child will have neurofibromatosis. Therefore, if only one parent has neurofibromatosis, his or her children have a 50% chance of developing the condition as well. Disease severity, however, can vary.

“There are so many different manifestations of the disease.” Gina Agiostratidou 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.”

At the moment, there is no cure for neurofibromatosis, she said.

Gillian Anderson, who played Scully on the X-Files is a spokesperson and helps in raising funds for neurofibromatosis, as her brother suffers from the disease.

In March 2008 the treatment of 30-year-old neurofibromatosis victim Pascal Coler of France ended after having received what his doctors call the world’s first successful full face transplant.

Help for Sufferers of Neurofibromatosis
One man, Dr. Hubert Weinberg, a plastic surgeon from Mount Sinai School of Medicine, located in New York City, U.S. is making a difference for sufferers of NF with new surgical treatment options for neurofibromas.

In one sitting with a process known as Electro-desiccation, hundreds of neurofibromas can be removed in under 2 hours. An electrical current is used to desiccate or dry out and kill the neurofibroma tissue — a far less invasive technique than the traditional surgical removal method that’s said to usually be painless.

The procedure is quickly performed on an out-patient basis — local anesthetic can be used for the entire front or back surface of a patient in 1 to 2 hours, but a general anesthetic is needed for removals over a larger area of skin.

There is no need for sutures. A scab forms in the cauterized area which falls off in a few weeks revealing new skin. As with all scabs, some scarring occurs which will typically fade away over time with the exception of some rare instances of keloid (red raised scar) or hypertrophic (abnormally large) scars.

Removal of bumps is not considered merely a cosmetic procedure, but necessary surgery due to the fact that the lesions have the potential to become malignant.

It is imperative that you provide your insurance company with the specific codes from the surgeon so that you qualify for coverage.

“They [neurofibromas] are associated with pain and discomfort, and they have a certain malignant potential. They can get larger, they are disfiguring.” says Dr. Weinberg. “I think that has to be clear with the patient and the surgeon that this is not cosmetic surgery and should not fall in the realm of cosmetic surgery not covered by insurance.”

Visit Dr. Weinberg’s website to learn more, where you can see before and after photos, or contact his office directly.

Very special thanks to my friend Linda who is an active member with the CTF for informing me of this surgeon and his website.

What would you do if afflicted with this disease? As the old adage goes, if you haven’t anything nice to say, don’t say anything at all. Please be kind and place yourself in their shoes for a moment before commenting.

For More Information about this disease, visit Children’s Tumor Foundation and Neurofibromatosis Inc.

Sources: KOMO News, News AU, FOX News, Metro and Wikipedia

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