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Doctors carry out an operation that changes the life of a person with rare skin diseases



When Enrique Galvan grew up in Paraguay, other children call him a monster.

When he was a toddler, a rare genetic disease called neurofibromatosis was diagnosed, resulting in benign tumors of his nervous tissue and created something that looked like particles of extra skin hanging from the head, neck, and face.

Only when he was old enough to go to school he began to notice – and other children too. "The harassment started at the age of 5. The other children started to annoy me with insults," Galvan, now 27, said in a telephone interview this week with The Washington Post . ] READ MORE:
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  Enrique Galvan was annoyed when he was younger as a result of his genetic disorder. </cite></p>
<p>  Enrique Galvan was annoyed when he was younger. </p><div><script async src=

"Then he got even worse when I became older." So when I became older, insults and isolation became even worse. "

He said that as a teenager he turned to drugs ̵

1; first marijuana, then cocaine – to deal with the pain of being" marginalized by other people "

" He has reached the point where he will completely ignorant and will turn my back, "he said about peer treatment." As if it did not exist. "

Over the years, Galvan had many operations in Paraguay to try to remove the large, heavy tumors hanging from his body

But because of the vast nature of his case, the procedures were unsuccessful

In the end, doctors in his home country

Following a medical trip to Paraguay last year and a plan to return Galvan to the United States for treatment, the Urquain University Medical Center decided to offer a free operation for him

  Enrique Galvan has neurofibromatosis, which is Enrique Galvano has neurofibromatosis, which some people confuse with Proteus syndrome, also known as "human elephant" </p>
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<p class= . This month, surgeons and other medical staff worked for eight hours to remove 2.7 kilograms of extra tissue from the skin of his chest, shoulders and back to help him have a more normal life, said Cristobal Barrios, a health trauma of the UCI.

Galvan is three years old when he or she is diagnosed with neurofibromatosis, which some people mistakenly call elephant male disease.

Dusica Babovich-Vuksanovich, a specialist in genetic syndromes and the Neurofibromatosis Clinic at Mayo Clinic, says that neurofibromatosis is rare, affecting one in about 3,000 people in the United States.

Babovich-Vuksanovic said the disease is difficult to manage because it can in various forms and different parts of the body, usually causing benign but sometimes rapidly growing tumors that are formed on the nervous tissue.

In cases where there appears to be excessive skin, Babovich-Vuksanovic said that the extra tissue is usually associated with a tumor known as plexiform nervefibroma

. neurofibromatosis is temporary and usually involves surgical intervention, but Babovich-Vuksanovic said that clinic Mayo and other larger medical centers are conducting a clinical trial of drugs that can help reduce tumors.

ENRIQUE GALVAN / FACEBOOK

Christopher Barrios, one of the surgeons who will be during my surgical intervention. God blesses you and guides you, "said Galvan on his Facebook page.

For years, Galvan suffered a secret.

He said he never told his parents how to bully in their native town of Luck, a suburb of Paraguay.

He never told them he was a social exile at school, and he never told them he was turning to drugs to squash everything.

Galvan told a translator, Jeff Kride, that he started using marijuana when he was 14, and that he used cocaine

"When I was 21, I realized this was not the right way for me and then I asked God for help, "Galvan said.

He explained that he had joined a group of the Catholic community and "then I began to meet Jesus and he began to heal me from all that I suffered, including from all my vices"

Casa Galvan, he has lost hope that surgeons in Paraguay will be able to heal his physical problems, noting that you could not get far from surgery because of the risk of excessive blood loss.

  Genetic disorder causes the development of tumors anywhere in your nervous system, including the brain.

Genetic disease causes the development of tumors everywhere in your nervous system, including in the brain.

Galvan said a friend noticed last summer that a medical humanitarian service called IMAHelps planned to visit Luke and he encouraged Galvan to see the doctors.

Mark Kobayashi, a plastic and reconstructive surgeon with UCI Health, and Barrios,

Barry said the doctors first met Galvan at the end of July in a reception tent outside the hospital. After a review, he said, they should explain to Galvan that because of the potential risks of bleeding and the need for intensive care and follow-up, surgeons can not carry out the procedure in Paraguay. Southern California to see what can be done.

One Sunday at the end of last month, Galvan flew to California. "I was eager and eager to arrive as soon as possible but I was also very happy," he said through Crider, a board member of IMAHelps. the day before his operation at Disneyland. His favorite riding? He said that on June 2, Galvan had entered an operation "confident that doctors knew what they were doing and that they would do well," he said. the upper part of his body was limiting his range of motion and compelling him to compensate by excessive use of certain muscles.

  Enrique Galvan after the life-changing operation. During the procedure led by Kobayashi, the surgeons removed the extra tissue on the left side of Galvan's back, his left shoulder and the left side of his back as well as his neck, said Barry. Now that most of the excess tissue has disappeared, surgeons will be able to remove the rest of the left side of Galvan's scalp next month when they return to Paraguay, Barriches said. He said they can not operate on Galvan's face because the affected tissue moves too deeply. </p>
<p class= Barry said that eventually some of the tumors would grow back, but that could take years.

Galvan said he was "more than satisfied."

He said life is already changing for the better, because when it comes home, "I can do some of the things I want."

Galvan, who enjoys running and soccer, plans to return home soon and says he is looking forward to returning to the football field. an example that encourages them not to lose faith.


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