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Lindsey Bever
Generalist journalist covering national and last-minute news
When Enrique Galvan grew up in Paraguay, other children called him a monster.
He had been diagnosed as being a toddler with a rare genetic condition called neurofibromatosis, causing the formation of benign tumors on his nervous tissue and creating what appeared to be additional skin fragments falling from his head, from his neck and his face. It was only when he was old enough to go to school that he began to notice – and other children too.
"Bullying began at the age of five. That's when the other kids started taunting me with insults, "Galvan, now 27, told a translator in a phone interview with the Washington Post on Wednesday. "Then the situation worsened with my aging. So, once I grew up, the insults and isolation became even more serious. "
He stated that when he was a teenager, he turned to drugs – first marijuana, then cocaine – to deal with the pain of being "marginalized". 39, other persons ".
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"They had come to the point where they would totally ignore me and turn my back on me," he said of his peers' treatment. "It was as if I did not exist."
Over the years, Galvan has undergone numerous surgeries in Paraguay to try to remove the large, heavy tumors hanging from his body. But because of the extended nature of his case, the proceedings were unsuccessful. In the end, doctors from his home country told him that they could not do anything for him anymore.
After a medical trip to Paraguay last year and a plan to bring Galvan back to the United States for treatment, the University of California at Irvine Medical Center decided to offer him free surgery. This month, surgeons and other medical personnel worked for eight hours to remove an extra six kilograms of skin tissue from the chest, shoulders, and back, to help restore normal life, said Cristobal Barrios. , trauma surgeon of the UCI Health Division.
Mark Kobayashi, plastic surgeon and reconstructor at UC Irvine Medical Center, examines Enrique Galvan in the summer of 2018 in Luque, Paraguay. (Jeff Crider)
Galvan was 3 years old when he was diagnosed with neurofibromatosis, a skin disease that erroneously call the "man-elephant" disease.
Dusica Babovic-Vuksanovic, genetic syndromist and neurofibromatosis clinic executive at the Mayo Clinic, said neurofibromatosis was rare and affected one in 3,000 people in the United States.
Babovic-Vuksanovic said the disorder was difficult to manage because it could occur in different forms and at different parts of the body, resulting in the formation of generally benign but sometimes rapidly growing tumors on the nervous tissue. It can cause disfigurement problems, muscular and skeletal problems, nerve damage and pain. In rare cases, she said, growths can evolve into cancerous tumors.
Babovic-Vuksanovic said that a surplus of tissue was usually associated with a tumor called plexiform neurofibroma.
The treatment for neurofibromatosis is temporary and usually involves surgery, but Babovic-Vuksanovic said that a clinical trial was underway at the Mayo Clinic and in other major medical centers for a drug likely to reduce the size of the tumors.
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For years, Galvan has suffered in secret. He added that he had never told his parents how he had been intimidated in Luque, a suburb of the Paraguayan capital, Asuncion.
He never told them that he was a social outcast at school. And he never said that he had turned to drugs to knock everything out.
Through the intermediary of a translator, Jeff Crider, Galvan said that he had started using marijuana at the age of 14 and that he had been consuming marijuana cocaine at the age of 17 years. "At the age of 21, I realized that it was not the right path for me and it was when I asked God for help," said Galvan.
He explained that he was engaging in a Catholic community group and that "it was when I started to become familiar with Jesus and he began to heal me of everything I suffered, including all my vices. .
Nevertheless, Galvan said that he had lost hope that surgeons in Paraguay would be able to deal with his physical problems, noting that they could not go very far with surgeries because of the risk of blood loss. excessive.
Galvan said that a friend had noticed last summer that a medical medical initiative called IMAHelps was planning to go to Luque, and he encouraged Galvan to consult with doctors. Mark Kobayashi, a plastic surgeon and reconstructor with UCI Health, and Barrios, a trauma surgeon, were among them.
Barrios said the doctors had met Galvan for the first time at the end of July in an admission tent outside a hospital. After an examination, he said, they had to explain to Galvan that because of the risk of bleeding and the need for intensive care and follow-up, the surgeons could not perform the procedure in Paraguay.
Barrios said the "look of disillusionment" on Galvan's face haunted surgeons. So Barrios started working with his hospital in Southern California to see what could be done.
One Sunday at the end of last month, Galvan flew to California. "I was anxious and anxious to arrive as quickly as possible, but I was also very happy," he said through the intermediary of Crider, a board member. 39, administration of IMAHelps.
Galvan said that he had gone to the beach, had made a trip to Hollywood and had spent the day before his operation at Disneyland. His favorite ride? Thunder Mountain, he says.
On June 2, Galvan was operated on "confident that the doctors knew what they were doing and that they would be doing well," he said.
Barrios said that Galvan had so much extra tissue on the upper part of his torso that he was limiting the range of his movements and required him to compensate by using some muscles excessively.
During the procedure, which was conducted by Kobayashi, the surgeons removed additional skin tissue from the left side of the chest, shoulders, and left side of Galvan's back, as well as from his neck, Barrios said. Now that most of the excess tissue is gone, surgeons will be able to remove a remaining part of Galvan's left scalp next month when they return to Paraguay, Barrios said. He said that they could not operate on Galvan's face because the affected tissue was too deep.
Barrios said some of the tumors would eventually regenerate, but that could take years. Other tumors may never grow back, he said.
Enrique Galvan in 2013. (Courtesy of Enrique Galvan)
Galvan said that he was "more than happy". He added that life is already improving, because when he goes home, "I will be able to do some of the things I want." Galvan, who loves running and football, plans to go home soon and said that he was eager to return to the football field.
But, he said, he also wants to help others – using his own life as an example to encourage them not to lose faith.
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