Ed Port Neurofibromatosis
GETTING HIS STORY OUT: Ed Port, who suffers from a rare disease that causes severe tumors on his face, will be featured on "News To Me" this weekend. The program airs on CNN HLN, formerly Headline News. He talks about hte interview in his Austintown apartment as his car, Cali, listens in.
By Denise Dick
A story on the township resident will air on CNN HLN Saturday through Monday.
AUSTINTOWN — Ed Port writes poetry, loves animals and enjoys cooking, but all some people see is his disease.
Neurofibromatosis type 2 causes severe tumors. For Port, 38, the tumors cover the left side of his face, obscuring his facial features and limiting vision in his left eye.
The Vindicator first wrote about Port and his condition in November. He’s since been in touch with plastic surgeons and other doctors and has received donations from a few people. Port has a Web site www.edneedsamiracle.com, but he is working to establish a nonprofit corporation to accept donations.
This weekend an interview with Port will air on CNN HLN, formerly Headline News. CNN conducted the interview last month.
A network representative said the show, “News To Me,” will air at 7:30 and 9:30 p.m. Saturday and Sunday and at 12:30 and 5:30 a.m. Sunday and Monday.
“You shoot it, we show it,” the network’s Web site says of the program. “‘News To Me’ is the world as seen through YOUR cameras.”
Vindicator chief photographer Bob Yosay shot the video of a CNN HLN reporter’s interview with Port.
Port hopes to raise awareness about the disease through the publicity.
Between ages 7 and 19, he underwent several surgeries, but the tumors returned. Since adulthood, health insurance companies have refused to cover the series of surgeries he needs to correct the problems.
“They say it’s cosmetic,” Port said.
The cost is expected to top $60,000 and require a team of doctors.
Port grew up in Andover, in Ashtabula County, and at about age 6 realized he looked different from other children.
“Another kid called me ‘fat face’ because of a tumor on the left side of my face,” Port said.
The name-calling — “big face,” “monster” — continued at least twice per week throughout school.
Teachers and some other kids chastised the name-callers and defended Port, but it had an effect.
Port contemplated running away from home.
His family, close friends and his faith helped him through the children’s taunts and continue to provide support as he faces difficulties as an adult.
Sometimes people stare upon first meeting the township resident. Other times, they look away.
The most blatant encounter happened a few years ago when Port crossed paths with a couple and their young child in an area store.
The mother gasped upon seeing Port then covered her child’s eyes. Port didn’t hear what the father said but deduced from the man’s facial expression both to the man’s wife, and then to Port, that he felt bad and criticized the woman.
“I’d rather they ask me [about the condition] instead of just staring,” he said.
Port works at an area call center and says his employer and fellow workers are supportive of him, but obtaining and keeping a job hasn’t always been easy.
Several years ago, Port’s job working in the public sector in Ashtabula was eliminated. He learned from his immediate supervisor that that man’s boss said Port shouldn’t be working in the public.
Other times, he’s been called in for interviews, but when he got to the office, was told the position was filled.
Port, who attends Holy Trinity Romanian Orthodox Church, Youngstown, has several interests outside work. He enjoys writing poetry, loves animals — he has fish and a cat — and likes to cook. Chicken cordon bleu is his specialty.
NF2 is hereditary, but no one else in Port’s family has it. He hopes for a family of his own and has learned from doctors that the chances of having a child who suffers from the disease are remote.
“I want to have a family,” he said. “I love kids.”
The condition isn’t painful although Port sometimes experiences discomfort, particularly in his left eye during periods of stress.
If he’s able to get help and have surgery, he wants to set up a foundation through his Web site.
“I want to help others who have NF2 or other conditions and can’t get the help they need — kind of like the movie, ‘Pay It Forward,’” he said.