A man with a size-16 foot is so miserable he's raising money to get the appendage amputated.
Jeffrey Ortega, 26, of Deerfield Beach, Florida, is afflicted with Proteus syndrome, a rare genetic mutation that causes overgrowth of bones, skin and tissue in certain body parts, but not in others.
There are only an estimated 2oo cases worldwide. Joseph Merrick, better known as the Elephant Man, had the disorder.
Ortega's mom first noticed the condition when he was 9 months old and had a swollen right index finger. Now, the condition affects his legs, hips, hands and, most notably, his feet.
Ortega's left foot is 17 inches in circumference and 14 inches long. His right foot is 14.5 inches in circumference and 12 inches long, according to Barcroft TV.
Ortega's feet are so deformed that they can only fit a pair of size 16 Crocs. The crevices from lumps and bumps are difficult to clean, so infections are common.
"If I didn't wash my feet during the day when I was in college, the odor was so strong that even flies started following around my feet," Ortega told Barcroft.
Ortega's feet were so deformed by age 11 that he stopped wearing regular shoes. He went barefoot when he couldn't get properly fitting shoes or socks.
“I was bullied a lot in school, kids would spit on me and said I wore my dad’s shoes," Ortega said, according to the Mirror. "I also fell a lot and was eventually pulled out of school because the principal didn’t want to take any chances with me -- it was nerve-racking for my family.”
Ortega has had 11 surgeries on his feet and has been considering amputation for years. His condition makes it difficult for him to walk or enjoy a normal life.
“Five years ago, we asked doctors if amputation would be possible,” he said, according to News.com.au. “I was ready for the surgery, but then met someone else who had their foot amputated, and it scared me seeing them walking on their knees."
Now, Ortega is ready to take that very drastic step with the amputation of his left foot, according to his GoFundMe.com page.
"I had to face the facts that because of the pain in my foot and all the rogue skin on the bottom of my feet that constantly get infected I need to have my foot amputated," he wrote. "The doctors who could help me amputate my foot cannot help me with it because of the financial issues that I face."
Since starting the campaign 13 months ago, Ortega has raised slightly more than $15,000 toward the $42,000 doctors say he needs for surgery, prosthetics and physical therapy.
A doctor familiar with Proteus syndrome warned that extreme care must be taken to ensure that amputation removes all the cells with the genetic mutation.
"If the amputation leaves behind any of those cells, they would grow back and that would be terrible," Dr. Charis Eng, who chairs the Genomic Medicine Institute at the Cleveland Clinic in Ohio, The Huffington Post. Eng analyzed the Elephant Man's DNA for the documentary, "The Curse Of The Elephant Man."
Considering the risks of amputation, Eng suggested Ortega may want to enroll in a medical trial involving mTOR inhibitors -- drugs that regulate cellular metabolism, growth, and proliferation, and target genetic pathways causing Proteus syndrome.
"They have been used in clinical trials on patients with a condition called Cowden syndrome, which are caused by inherited mutations in the same gene, PTEN. The lumps and bumps disappeared," said Eng.
Eng offered to have experts talk with Ortega and make him aware of all other options besides amputation -- including appropriate clinical trials.
The Huffington Post's efforts to reach Ortega were unsuccessful.
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Source: http://www.huffingtonpost.com/2015/10/15/jeffrey-ortega-size-16-feet-amputation_n_8341578.html?utm_h ... and provided by entertainment-movie-news.com
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