“I’ve got a wide spring in my eyelid to allow my eye to open and close. The disease has caused tumors to sprout wildly throughout his skull, producing extreme disfiguration and chronic pressure on his brain. 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.

“Something amazing happened that day," he said of the first time he spoke to students. 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 That results in debilitating migraines that don’t last weeks, but months.

Newton is one of less than 10,000 in the world to have been diagnosed with such a potent strain of neurofibromatosis. A challenging childhood for Eddy in Riverside, Calif. Elephantitis or elephantiasis disease in males is characterized by the inflammation of the scrotum or the testicles to …

Apart from Merrick's deformities and the lameness in his hip, Treves said that Merrick was in generally good health. At left is a young boy identified only as Dylan.

Symptoms are often mild. And rather than shirking from public view, Newton – who shrugs off the gasps and double stares – has long been speaking to students in Southern California about self-esteem issues. Market data provided by Factset. But each day brings a succession of battles to stay alive. You've successfully subscribed to this newsletter! Mutual Fund and ETF data provided by Refinitiv Lipper. 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. 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. When Merrick gained fame for his distorted figure, his condition was not officially diagnosed - but later research pointed his disorder to Proteus syndrome. Eddy had a … However, in 1986, geneticists showed that Merrick had not Nf1 … Medically termed as elephantiasis or lymphatic filariasis, it is usually misspelt as elephantitis. All Rights Reserved. “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. It was like I had just witnessed a miracle that day, watching this young girl come out of her shell.

According to Neurofibromatosis, Inc., a persons nervous system will cause the body to grow grotesque tumors on the nerves anywhere on the body. Jordan's disorder also affects his spine, neck and legs. Only a few hundred people in the world have Proteus syndrome, a bizarre condition in which a mutant gene causes asymmetrical growth of body parts. 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. 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. Stay up-to-date on the biggest health and wellness news with our weekly recap. Legal Statement. Joseph Merrick was, of course, the 19th-century British man who became the poster child for neurofibromatosis, better known as “Elephant Man” syndrome. Powered and implemented by FactSet Digital Solutions.

Medical scientists have not yet discovered how to stop neurofibromatosis from proliferating through the face and body. 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.

The disease, among the most common human genetic disorders, is best known to the public as ''elephant man'' disease because of a famous case in 19th-century England attributed to … People with Proteus syndrome are born appearing normal - symptoms typically arise in the first two year's of a child's life.

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. When he was just 7 years old, a doctor removed a 7.5-pound tumor from his cheek. Emotionally, I was dead inside.

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. "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.

Elephantitis is the common term used for a disease that causes the inflammation and thickening of the skin and the tissues underlying the same. Just a … 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. Fox News Flash top headlines for Sept. 16 are here.

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

As his head and facial deformities continued to grow, Merrick could no longer travel and live on his own. Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue. Eddy has undergone more than 30 major surgeries and more than 50 minor ones to control the growth of tumors. 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!”. “But there were good people too. Elephantiasis is the enlargement and hardening of limbs or body parts due to tissue swelling. In the case of Sebastian, a young boy from Australia, Proteus syndrome has distorted his face and spine. (Provided Eddy Newton). 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. When Eddy Newton was 3 years old, he developed a red blotch on his face. This material may not be published, broadcast, rewritten, 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. Election Live Updates: Americans brace for results as polls close, 2020 Senate and House Live Elections: Polls close in 3 key states, Judge orders sweep of postal facilities for mail-in ballots, "Don't be scared" of voter intimidation, Michigan official says, Stocks rally worldwide as Election Day finally arrives. This material may not be published, broadcast, rewritten, or redistributed. Quotes displayed in real-time or delayed by at least 15 minutes.

I went to the airport in Tennessee, and I flew home.”, WOMEN PLASTIC SURGEONS IN AFRICA LEADING CHARGE AGAINST MOST UNDERREPORTED HEALTH EPIDEMIC IMPACTING MALES. “My mom has been helping me her whole life,” Newton said. For many years it was thought Joseph Merrick, widely known as the Elephant Man, had suffered from neurofibromatosis type 1 (NF1). Copyright © 2020 CBS Interactive Inc.All rights reserved. His skin was also covered in warty growths, the largest of which exuded an unpleasant smell, according to his surgeon Frederick Treves. It is not known for certain what caused Merrick’s deformities. Merrick believed that they developed because his mother was frightened by an elephant while pregnant. 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. Now 13, Abby says she wants to attend college to be a surgeon or a hairdresser. Talk about rare diseases. 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. ©2020 FOX News Network, LLC.

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