Doctors practice a surgery that changes the life of a man with a rare skin disease



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

When he was toddler, a rare genetic condition called neurofibromatosis was diagnosed. She caused the formation of benign tumors on her nervous tissue and the creation of what appeared to be additional skin fragments falling from her head, neck, and face.

It was only when he was old enough to go to school that he started noticing – and other children too.

"The bullying began at the age of five, it was then that the other children started taunting me with insults," said Galvan, 27 years old now, through a translator during a telephone interview this week with The Washington Post.

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Enrique Galvan was teased when he was younger because of his genetic disorder.

The Washington Post

Enrique Galvan was teased when he was younger because of his genetic disorder.

"Then the situation got worse as I got older, so once I got older, the insults and isolation got worse."

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 ".

"They got 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 Irvine Medical Center decided to offer him free surgery.

Enrique Galvan is afflicted with neurofibromatosis, which some people confuse with Proteus syndrome, also known as 'elephant human disease'.

ENRIQUE GALVAN / FACEBOOK

Enrique Galvan is afflicted with neurofibromatosis, which some people confuse with Proteus syndrome, also known as 'elephant human disease'.

This month, surgeons and other medical personnel worked for eight hours to remove approximately 2.7 kilograms of additional skin tissue from the chest, shoulders and back to allow him to return to a more normal life, said Cristobal Barrios, surgeon specialized in injuries to health at the UCI. .

Galvan was three years old when he was diagnosed with neurofibromatosis, which some people mistakenly call "human illness at the elephant".

Dusica Babovic-Vuksanovic, genetic syndromes specialist and director of the neurofibromatosis clinic at the Mayo Clinic, said neurofibromatosis was rare and affected one in every 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.

ENRIQUE GALVAN / FACEBOOK

"Dr. Christopher Barrios is one of the surgeons that will be during my surgery, God bless you and guide you," Galvan said on his Facebook page.

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 told them 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 21, I realized that it was not the right path for me, and it was at that time that I asked for help to God, "said Galvan.

He explained that he had been involved in a Catholic community group and that "it was at that time that I started to familiarize myself with Jesus and he started to me." to heal all that I had 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.

The genetic disease causes the development of tumors throughout the nervous system, including the brain.

ENRIQUE GALVAN / FACEBOOK

The genetic disease causes the development of tumors throughout the nervous system, including the brain.

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 of 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 "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.

Enrique Galvan after the surgery that changes the life.

ENRIQUE GALVAN / FACEBOOK

Enrique Galvan after the surgery that changes the life.

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 portion 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.

Galvan said that he was "more than happy".

He said that life was already improving because once back home, "I will be able to do some of the things I want".

Galvan, who loves running and football, plans to return home soon and said 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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