As his head and facial deformities continued to grow, Merrick could no longer travel and live on his own. Merrick died at age 27 from suffocation, caused by the weight of his own head as he lay down. But each day brings a succession of battles to stay alive. Copyright © 2020 KABC-TV.

“It is time to take care of my mom.”. Talk about rare diseases.

All his life, Eddy Newton has had to deal with stares and teasing because he suffers from neurofibromatosis, also known as Elephant Man's disease. This material may not be published, broadcast, rewritten, or redistributed. Eddy has undergone more than 30 major surgeries and more than 50 minor ones to control the growth of tumors. You've successfully subscribed to this newsletter! 22 is most expensive in California history. When he was just 7 years old, a doctor removed a 7.5-pound tumor from his cheek. Keep clicking to see more images of Merrick, along with modern-day children suffering from Proteus Syndrome... Merrick's head was 36 inches in circumference, his right wrist 12 inches and one of his fingers 5 inches.

A challenging childhood for Eddy in Riverside, Calif. It was long thought that Merrick had an extremely severe case of neurofibromatosis, but it is now thought more likely that he suffered from Proteus syndrome, a rare disease.

He was admitted into a London hospital, where he required a great deal of care from nursing staff - even though the hospital was not equipped to care for "incurables" such as Merrick. Elephant man disease is the common name of the genetic condition neurofibromatosis (NF). Legal Statement.

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That results in debilitating migraines that don’t last weeks, but months.

"Whenever I left the tent area, if I wanted to get something to eat, I had to cover my face with a hood so that nobody would get a free look.

He recalled walking into a local diner just a couple of weeks ago, when a man who was there with his family immediately started bellowing “Oh my God, I would put a gun to my face if I looked like that!”.

He volunteers at an orphanage in Tijuana, Mexico, and spent four months assisting the homeless after Hurricane Katrina ravished the livelihoods of thousands in 2005. Now 13, Abby says she wants to attend college to be a surgeon or a hairdresser. Newton’s friends recently launched a GoFundMe campaign on his behalf to raise funds for his youth ministry, and enough to repair his ailing mobile home. He hopes that in sharing his story with more teens across the country, he can foster a deeper awareness around bullying and the struggle to overcome low self-confidence.

She has extensively reported from war zones including Iraq, Syria, Yemen, Afghanistan, Pakistan, Burma, and Latin America investigates global conflicts, war crimes and terrorism around the world.

(Provided Eddy Newton). Just a … But rounds of chemotherapy and radiation are also part of his bid to keep living and control the continuous tumors. What went wrong with polls in 2016?

“There was a lot of bullying, and I changed schools several times,” Newton recalled of his turbulent childhood.

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Merrick believed that they developed because his mother was frightened by an elephant while pregnant. One girl saw it, and she jumped off the chair and fought him over it.”, MEDICAL MIRACLES: CHILD BURN VICTIMS IN SYRIA BROUGHT TO US FOR LAST SHOT AT LIFE, Even today, Newton still marvels at the adults who mock him – and he marvels at those who boldly come to his defense. All rights reserved. This photo, courtesy of the Proteus Syndrome Foundation, was taken when Dylan was five years old - now 12, he enjoys football and baseball and plans to attend college to study a sports-related field. Election Live Updates: Americans go to the polls as bruising campaign ends, The states where you can register to vote on Election Day, Report cites militia activity risk amid fears of Election Day unrest, Pennsylvania voters head to polls as race tightens in key state, The races that could determine who controls the Senate, A guide to the election's top ballot initiatives, The pivotal post-Election Day dates you need to know. His skin was also covered in warty growths, the largest of which exuded an unpleasant smell, according to his surgeon Frederick Treves. (Eddy Newton). The dizzying number of surgeries has left Newtown with deep facial and neck lacerations, a sagging eyelid and chin, no right ear, and only a few teeth left. But at his lowest point, in 1996 he resorted to taking a job with the Ringling Brothers and Barnum & Bailey circus, where he traversed the American countryside as the “Man with Two Faces.”, “I was the sideshow freak," Newton said. The intensity and frequency of his migraines and the ceaseless surgeries have made it difficult for Newton to find and hold down a job, and the struggle to make ends meet has resulted in dilapidated living conditions. People with Proteus syndrome are born appearing normal - symptoms typically arise in the first two year's of a child's life. Market data provided by Factset. For many years it was thought Joseph Merrick, widely known as the Elephant Man, had suffered from neurofibromatosis type 1 (NF1).

It affects the arms, legs and the male and female genitals most commonly.

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At left is a young boy identified only as Dylan.

Since then, he has leaned on his mother as a beacon of love and support. I felt nothing. Still, that didn't stop Merrick from making a living as a human freak show, as he traveled being exhibited as "Half-a-Man and Half-an-Elephant.".

Medical scientists have not yet discovered how to stop neurofibromatosis from proliferating through the face and body. Newton said his father abandoned him at just 7 years old – disappearing without so much as a goodbye.

Finally, after nine months, I woke up and asked myself what the heck I was doing. Yet the most challenging aspect of living with “Elephant Man syndrome” has been contending with the deep psychological scars that it renders and the taunting that comes from his physical appearance. “The doctor pulled out a picture of [Joseph] Merrick and told me this is what I will look like,” Eddy Newton, 47, recalled to Fox News. However, the exact condition suffered by Joseph Merrick is still not known with certainty. Symptoms are often mild. Man because of his grotesque appearance, did not suffer from the disease that is named after him, say radiologists in London.

That trajectory began on Oct. 1997, when a disabled man in a wheelchair came into the record store where he was working and asked him to talk to some high schoolers. All Rights Reserved. Recently, he founded a non-profit ministry, “Eddy Unmasked." When Merrick gained fame for his distorted figure, his condition was not officially diagnosed - but later research pointed his disorder to Proteus syndrome. Legal Statement. Elephantitis or elephantiasis disease in males is characterized by the inflammation of the scrotum or the testicles to … or redistributed. WOMAN BATTLING RARE 'SUICIDE DISEASE' HAS LEG AMPUTATED IN HOPES OF FINDING RELIEF FROM CHRONIC PAIN.


Neurofibromatosis is usually diagnosed in childhood or early adulthood.The tumors are usually noncancerous (benign), but sometimes can become cancerous (malignant). Most recently, Newton went under the knife to remove an array of new tumors mottling his face and to revise his jawline, which doctors hope will assist with his breathing. “But there were good people too. In a 1986 article in the British Medical Journal, Michael Cohen and J.A.R. “My mom has been helping me her whole life,” Newton said. Jordan's disorder also affects his spine, neck and legs.

Then a lump under his right eye. Bone overgrowth can cause orthopedic problems and skin overgrowth can cause cosmetic concerns, but most children and adults with Proteus syndrome have normal intelligence and good general health. Check out what's clicking on

The syndrome can be horribly disfiguring, as you can see in this illustration of Joseph Merrick, the 19th Century Englishman who became known as the Elephant Man.

When Eddy Newton was 3 years old, he developed a red blotch on his face. “A big biker stood up – he must have been about 6’9"--and warned him to sit down before he endured the most embarrassing six seconds of his life,” Newtown recounted. Newton is one of less than 10,000 in the world to have been diagnosed with such a potent strain of neurofibromatosis. Eddy had a …

Copyright © 2020 CBS Interactive Inc.All rights reserved. This photograph of Merrick was published in the British Medical Journal with the announcement of his death in 1890. Stay up-to-date on the biggest health and wellness news with our weekly recap. Joseph Merrick was, of course, the 19th-century British man who became the poster child for neurofibromatosis, better known as “Elephant Man” syndrome. Elephantiasis is the enlargement and hardening of limbs or body parts due to tissue swelling.

Proteus syndrome often affects fingers - as seen in those of 16-year-old Jordan, pictured left. The dizzying number of surgeries has left Newtown with deep facial and neck lacerations, a sagging eyelid and chin, no right ear, and only a few teeth left. Hollie McKay has a been a Fox News Digital staff reporter since 2007. The disease has caused tumors to sprout wildly throughout his skull, producing extreme disfiguration and chronic pressure on his brain. I knew then I wanted to help people, stop with the bullying and cyberbullying and all the attacking people do to each other.”, Newton talks to teens across the country in the hopes of raising a deeper awareness about bullying and self-esteem

Just a few years shy of 50 – Newton has defied the odds and is one of the oldest persons to survive such a severe strain of the condition.