Gene's Story:

Until I started dating Gene, I had never heard of NF. I knew him for several months before we began to date, and had noticed the golfball-sized, spongy tumor on his left cheek, but never asked about it, for fear of embarassing him. We met through a social event for a local BBS. We were both there to meet someone special. It took me a little while to discover that he was that special someone. But, since that first date when we went out for coffee and sat at the restaurant talking for five hours, we have been inseparable. It was on that first date that Gene "confessed" to having NF.

He's one of the fortunate ones. He has not had to have any surgery so far, most of his tumors are not painful, and they are easily hidden by his clothing. There are some troublesome internal tumors that cause him a great deal of pain from time to time. The pain is completely unpredictable. One day, he's fine. The next, the slightest touch causes him tremendous agony. The problem tumors are located next to his spine and in the back of his neck. There is also one in his upper thigh that causes complete loss of function in that leg for short periods of time.

He has several accompanying conditions, most of which he didn't know were associated with NF until I started doing my research on the internet. His chest is caved in (pectus excavatum). His left lung has collapsed spontaneously on two occasions. He has scoliosis. He likes to wear hats, but has a difficult time finding one that fits, because his head is quite large (yes, that's from NF!).

Gene's mother, one in a family of 13 children, had NF. She was the only person in her immediate family who had it, but she had an aunt with the disease. Gene's mom died from complications of emphysema when she was only 41 years old, leaving behind a husband and four children.

All of the four children have NF, none to a debilitating degree. Gene's older brother has a few tumors, but is otherwise unaffected. His two sons show no signs of the disease. Gene's younger sister had cafe au lait spots, but no other symptoms.Gene's younger brother is totally covered with hundreds of tumors, but doesn't have any other associated problems.

Gene has a twelve year-old daughter who has NF. She's a bright little girl - spiritually, emotionally, and intellectually. She does seem to be one of the fifty percent of NF folks who has a learning disability, and is taking some special classes in school. Right now, the only signs of her disease are a few cafe au lait spots. She calls them her, "special spots," as she's been taught that NF is one of the things that makes her unique and special. She's particularly proud of one that she has on her back, because her daddy has one in the exact same place on his back!

Gene has endured a lot of discrimination, persecution, and humiliation as a result of looking "different." At one time, he worked for a company that had special tee-shirts that all employees were required to put on when they arrived at work, and take off when they left. Gene was singled out and told that he could not change his shirt outside of the locker room, where others might see him and be offended.

Before Gene and I started dating, a woman from the BBS where we met confided in me that she'd had a blind date with a man she'd met on the board. She said, with disgust, that when she met this man, he had a huge lump on his face. She acted as though he had commited some crime by going out in public, let alone meeting her! At the time, I just dismissed her as another arrogant jerk. Since getting to know Gene and his beautiful, precious heart, I can only say that "jerk" is too good for her.

Gene was a champion swimmer in high school. But, for many years, he didn't go near the water because of stupid cruel remarks people would make to him and about him. Many thought that they or their children might catch whatever it was that he had. Others were just plain mean. So that his daughter could enjoy going to the beach with her daddy, Gene screwed up his courage, and I printed up some info about NF that I'd found on the internet, and we started going to beaches. There hasn't been any problem at all, and he's having a wonderful time playing with his daughter! I still bring printed information when I remember, in case someone has concerns, but so far, it hasn't been necessary.

On a lighter note, we have a little dog who occasionally tries to nurse on Gene's tumors. We got her when she was very young, and she's always looked at Gene as a mother figure.

I feel that it's very important that people know more about NF. It's more common than Muscular Dystrophy, from what I understand, yet most people have never heard of it. I think we need a telethon. As anyone with NF knows, one group that needs a lot more information on NF is physicians. It's extremely frustrating trying to find a doctor who knows what NF is, let alone understands its complexities.