neurofibromatosis cafe

A place to talk about NF, have fun and share.

An article about my friend, Ed Port, from Youngstown, Ohio!

beyondface_articleBy 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 http://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.

denise_dick@vindy.com

January 30, 2009 - Posted by | neurofibromatosis | , , ,

10 Comments »

  1. I’m proud to call Ed Port my friend.

    Comment by Reggie Bibbs | January 30, 2009 | Reply

  2. Very good article about your friend Ed. It’s very well for you to write this text! Kind regards Francis

    Comment by Boyer-Madrieres.Francis | February 1, 2009 | Reply

  3. Between reggie, francis and ed, the word is getting out about nf. Big time!

    Comment by lou | February 2, 2009 | Reply

  4. Yes I got a message from Duke in the UK. He ask to be friends on myspace. He said because of JUST ASK he is a stronger person.

    Comment by Reggie Bibbs | February 2, 2009 | Reply

  5. Francis I have not forgotten about the magazine. I will get one to you. Thank you for being here on the blog.

    Comment by Reggie Bibbs | February 2, 2009 | Reply

  6. Hello Everybody Im working on a cherry 7up Im glad to be a part of this group

    Comment by Shelley | February 2, 2009 | Reply

  7. Good Morning Shelley. Have you heard from Brian? I hope he is doing well.

    Comment by Reggie Bibbs | February 3, 2009 | Reply

  8. Hi Reggie No I havent heard from Brian hope he is well too

    Comment by Shelley | February 3, 2009 | Reply

  9. I started a new blog Shelley. Check it out. I will be back on in about 2 hours. I’m leaving the office. Will return when I get home.

    Comment by Reggie Bibbs | February 3, 2009 | Reply

  10. Hello Everyone Hope all is well.

    Comment by ed | February 8, 2009 | Reply


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