Hey, Jeffrey Ortega, What’s Your Story?

Jeffrey Ortega is probably as far as possible from a typical CVE resident. It’s not just because he’s 36 years old. It’s not just because he navigates the Village in a wheelchair. And it’s not because he was born in Colombia. He doesn’t qualify as a typical resident anywhere in the world. That’s because he is one of only about two hundred people with a particular medical diagnosis.

You might know the condition as Elephant Man disease, but it is more properly called Proteus syndrome, after the shape-shifting Greek sea god. It consists of an overgrowth of skin, bones, muscles, fatty tissues, and blood and lymphatic vessels. It has affected Jeffrey’s hands, feet, legs, hips, and especially his back.

It started when he was nine months old. His mother, Alicia, noticed a lesion on his index finger and, thinking it might be a mosquito bite, tried home remedies to no avail. By the time he was a year old, his left leg was longer than the right. After two surgeries that failed to correct anomalies in his right leg and foot, he began using crutches and a wheelchair. But the doctors had nodiagnosis. His mother blamed herself—although we know now that Proteus syndrome is caused by a genetic mutation that is not inherited.

When Jeffrey was 11, his mother sent a homemade video to Shriners Hospital in Tampa. Doctors invited him to come for an exam. They had no diagnosis either, gave him a wheelchair, and advised them to return to Colombia.

Jeffrey’s mother decided that was not an option. Fortunately, a great synchronicity occurred. The Colombian couple with whom they were staying in Tampa had a son-in-law who was a doctor. In his studies, he’d learned about Proteus syndrome. Only two doctors in the world had the protocolfor it, one at the National Institutes of Health in Bethesda, MD, and one in the UK.

To be closer to the NIH, Jeffrey and his mother settled in Hampton Bays, Suffolk County, Long Island, where she had a friend. During his high school years, when he had his 11th and final surgery in 2004, he had a difficult time accepting his condition. “When you’re a teenager,’ he says, “you want to be like everybody else.” After high school, he attended Suffolk Community College in Riverhead, where he studied graphic arts, web design, and business.

Eventually, his mother moved them to Florida to escape the New York weather. A friend of hers had an apartment in CVE, and she wanted one, too. “Although it made a lot of sense,” Jeffrey says, “I was unhappy at first because it’s a 55-and-older community. But I got used to it. It’s very calm, and I enjoy talking to the people here.”

Jeffrey wondered whether he could get a job. But then he realized, “My brain is fine. My heart isfine.” For the 11 years he has been living in CVE, he has been teaching here: classes in computers and cellphones, Spanish, and English.

Jeffrey says, “I love teaching seniors. They have so much experience in their lives, but they want to learn more. If I can help them do that and I see them smile, I’ve accomplished my mission and done a great job. I learn from teaching them as well. My mom said, ‘Treat them like you would treat me, with respect and patience.’”

Jeffrey often has pain in his lower back and the backs of his thighs. His current doctors are on alert for signs of DVT (deep vein thrombosis), a type of blood clot. For that reason, he can’t remain sitting all the time, and he receives medication to keep his blood from clotting. He says, “I have a lot of hobbies. I go to the gym, the pool, the beach, and movies. I’m always active andlove being part of the community. I have a girlfriend, whom I’ve been dating for nine years, and she can see past my condition.

Mom always tells me, ‘Do not be afraid to talk about it. Show them that you may be different, but you’re still a human being.’” As a result, Jeffrey has been on social media videos multiple times and on TV, including the TLC show “My Feet Are Killing Me.” 

He says, “I am happy more days than not. I’ve devoted my life to God. I also teach outside the Village, at the Chen Medical Center. My advice is, Don’t give up on your dreams. Keep chasing them.”

If you’re interested in learning more about Jeffrey Ortega, you may want to know that he’s writing a memoir. It is bound to be as unique as he is.