March, 9 1998
By Larry Kaplan
Like the FBI agent she plays on The X-Files, Gillian Anderson is on a quest for answers, but they have nothing to do with alien abductions or government coverups. Her 17-year-old brother, Aaron, suffers from an extremely common but grossly misunderstood genetic disorder called Neurofibromatosis, or Nf for short. And the frightening lack of support and information the Anderson family have had to endure has prompted Gillian and her mother, Rosemary Anderson, to embark on a mission to provide information and assistance for other sufferers.
"One of the hardest things about Nf is that it's progressive," says Gillian. "In Aaron's case, we are as supportive as we possibly can be with where he is at this time, but the reality is that it can progress and affect him more seriously on a physical level at any time in his life."
The disorder was completely misunderstood for years, often being mistaken for the Elephant Man's disease - which is actually an entirely different illness. The extensive tumour growth that occurs in more severe sufferers usually distorts the appearance of their faces and bodies.
Because of the cosmetic problems that are common with Nf so many sufferers have to deal with the judgments and ridicule of people around them on a daily basis," says Gillian. "They have to deal with so much anyway, and to have something hyped in such an insensitive way just kind of adds fuel to the flames." Aaron himself is very philosophical. "They can say whatever they want," he says. "But it doesn't affect me. I know the truth, I'm living the truth."
While not a form of cancer, Neurofibromatosis has been lethal in some cases. It can produce complications in all parts of the body, including the brain. It causes growths or tumours to form on nerves throughout the body and can lead to serious medical and developmental problems which are occasionally disfiguring.
When Gillian was just 16, three-year-old Aaron was diagnosed with the condition. Rosemary, a semi-retired computer programmer, remembers her shock and her immediate denial: "That's not possible there's nothing wrong with him! You know, he's perfect!" she said at the time.
While her older daughters, Gillian and Zoe grew up free from the condition, it took a long time for Rosemary to accept the fact her handsome son had something for which there was no cure. "I went through a period where I knew he was healthy, that nothing was probably going to happen to him for a real long time, and I kept saying, 'Why do I need to know this now? I can't do anything about it.' I thought somehow it would be better not to find out until there really was something happening. "But eventually I realised I did need to know. And I needed to make sure that he got regular medical attention, because, although Nf is not yet curable, it has manifestations that can be treated."
"We are among the most fortunate of Nf families," says Gillian, who recently agreed to become an official patron of the British Nf Association. "My brother is mildly affected - so far, so good. But it is not just Aaron. Nf is worldwide and can happen in any family. And I must say that if the horror of this disease isn't enough to promote financial support, something you might want to consider is that the study of Nf and Neurofibromatosis research is already providing breakthroughs in understanding more about cancer."
In the '80s, finding a physician skilled in treating Nf wasn't easy for the Andersons. Incredibly, they might not have known about Aaron's condition if their neighbour, Bette Contreras's daughter, Melissa, hadn't been previously diagnosed with Nf.
"Bette was doing daycare for Aaron," says Rosemary. "Her daughter was diagnosed at the age of two. When she said Melissa had these birthmarks, it didn't register at all with me. "Then at some point, I went over to her house and said, 'What are these cafe-au-lait spots you keep talking about? Show them to me.' So she showed me Melissa's spots and I said 'Well, Aaron has those.' And Aaron did have at least a dozen. All it takes is five or six. It seemed like such a coincidence."
Fortunately, like Aaron, Melissa's complications from Nf have been minimal. "I wondered if it was going to be any big thing, if it was going to affect me so much," says Melissa, now 15. "I have these little bumps really tiny ones on my arms, and I have this little lump on my foot, but that's about all."
As a result, Bette and Rosemary have over 12 years, maintained and expanded the Neurofibromatosis Support Group in their home town in West Michigan. They were also instrumental in establishing a Nf treatment clinic nearby. In addition, Rosemary writes and publishes a regular newsletter filled with the latest facts and research about the disorder. "To be honest, I could make myself a 35 or 40 hour week out of Nf work," says Rosemary. "There's plenty to do. But there's no income - at all."
Gillian donated a variety of autographed items and X-Files merchandise to a worldwide Nf auction over the Internet last spring. What's more, she has designed an original celebrity T-shirt and designated a portion of the gross profits to go to the US organization Neurofibromatosis Inc.
"Gillian's life is so hectic, but she does those little things here and there," Rosemary says. "Simply having her name attached helps. "What we need is for Neurofibromatosis to become a household word in the same way that cystic fibrosis or Alzheimer's or some other conditions are," she adds. "That will help to take some of the stigma off it, when people can say, 'Sure I know what Neurofibromatosis is ... I know somebody who has Nf.' "
The most common early sign of Nf is a half dozen or more spots - circular or oval fat brown patches anywhere on the skin, usually appearing during the first year of life, often accompanied by freckles under the arm or in the groin area. Other signs include benign soft tumours or lumps on or under, the skin, tan spots on the iris, optic glioma (a tumor on the nerve leading to the eye) and bone abnormalities such as curvature of long bones in the leg. Nf can also be genetic.
"We're very fortunate with Aaron," Rosemary acknowledges. "He's a cute, normal-looking kid. It's not inevitable that your child is going to be visibly affected. People need to meet other people who are mildly affected so they can see that there's plenty of hope for their child."
Aaron has personally been helped by the support group his mother leads. "Seeing other people who have the same condition as myself is always comforting," he says. "It's helpful to appreciate people who have it more severely. And being able to accept them as they accept me, as normal people."
Aaron also has a message for other kids with Nf "Don't let anyone tell you you're different, 'cause you're not. It's not a big deal, we're all the same kind of people. Just trust in your family and in yourself. Don't let what anyone else says affect you."
You can call the Australian Neurofibromatosis Foundation on (02) 9628 5044 or reach NF, Inc. at (301) 577-8984.
Transcript provided by Kim and appears courtesy of New Weekly.