Four years ago when Anna Reid was born, everyone in the delivery room marveled at her white hair, eyelashes and eyebrows. But it wasn't until two months later, after her father told her pediatrician that the infant's eyes weren't tracking, that her coloring became an issue.
The doctor's diagnosis: Anna had albinism, a rare genetic condition that affects about one in 18,000 Americans.
People with albinism -- they prefer not to be called albinos -- have little or no pigment in their hair, skin or eyes. They are overly sensitive to the sun and their appearance often makes them look very distinct. While that can create psychological problems, the visual impairment caused by a lack of pigmentation in their eyes is often the most difficult obstacle.
For parents like Mike Reid and his wife, Tricia Grable, of Arlington, the initial diagnosis of albinism raised more questions than it answered. "The one remark that sticks in my mind was when we were asking an ophthalmologist how much she would be able to see, and he said, 'Well, she won't get hit by a bus.' " Reid recalled.
Reid and Grable said they quickly learned not to depend on the medical community for information.
"I didn't get any sound documentation about albinism until I was in college," said Tyrone Barksdale, a 32-year-old radiation therapist who lives in Washington. "My mother thought it was an aberration, something genetic that just happened. My father felt it might have been something he or my mother did. He never really wanted to talk about it. And even the specialists . . . the ophthalmologist and vocational rehabilitation people had very little information to give me. When I was in college, I went to medical libraries and tried to do research, but the articles were just clinical, studies of albino animals, not social studies of people."
Barksdale, who is black, said albinism can be especially traumatic for minorities. "Once when I was about 5, I went with some kids to the municipal pool in Halifax, Va., which at the time was segregated. I looked white, but the people there would not let me go swimming because I was black. I said, 'But I'm whiter than most of the kids here,' and I started crying. That was the first time I realized that not only was I different because of my albinism, I was different racially and ethnically."
Virginia Small, a 35-year-old Alexandria artist, has found that "being a black woman with albinism is very difficult when you are in a crowd of your own race. You really do stand out, and people have misconceptions about you and about your parentage."
People with albinism struggle not only with the idea that they look different, but they see differently, too. The condition affects the eyes in several ways. Many, when tested, are considered legally blind. Yet most do have some vision. If they get close enough to an object, they can see it, which enables them to read. But a blurriness sets in at just a few feet away.
In addition, people with albinism lack binocular vision. Their optic tracks "tend to be completely crossed," according to Carl Witkop, professor of genetics at the University of Minnesota. A person with albinism can see out of both eyes but can't see the same object with both eyes at the same time. People with albinism suppress the use of one eye, while preferentially selecting the other, according to Witkop.
Another eye condition in people with albinism is nystagmus: the constant side-to- side movement of the eyes. That is what the pediatrician noticed while she was examining Anna Reid.
"Nystagmus bothers other people more than it bothers us," said Janice Knuth, coordinator of social services at Wills Eye Hospital in Philadelphia, who has albinism. "Even adults don't generally handle somebody else's nystagmus very well." She recalled a teacher saying to her, " 'You just keep looking down, because your eyes make me nervous.' That kind of negative comment is very hard for anybody to take."
When parents first learn of their child's albinism, they often blame themselves or their spouse. The parents are both usually normally pigmented, with no knowledge of any history of the condition in their families. But albinism is an inherited recessive trait -- each parent must be a carrier. "It is a very, very old mutation," said Witkop, which occurs throughout the animal kingdom and in insects and plants as well. Witkop says that the odds of producing an albino child are one in 10,000. In families that do have a child with albinism, there is a 25 percent chance with each pregnancy of producing another.
Because the condition is so rare, Small grew up knowing no other people like herself. "I'd seen pictures of people with albinism in medical books, but I'd never seen another living person with it until 1984."
That was when she joined NOAH (National Organization for Albinism and Hypopigmentation), which was formed in 1982. NOAH currently has 700 members and has become a support group for people with albinism and their families.
Through the organization, new parents learn that their child can lead a relatively normal life. At national conventions, older members serve as role models. Many have overcome their poor vision to become doctors, teachers, scientists, computer specialists and homemakers.
For Reid and Grable, attending a national NOAH conference when Anna was 5 months old was a turning point. They got reassurance from other parents and came away feeling that though there would be limitations, they were not as severe as they had imagined. "Once Anna was crawling and walking it was so obvious that she was perfectly okay. We still don't know what she sees, but there is nothing that she wants to do that she can't do," said Grable.
While Anna's parents stress their optimistic attitude, they admit that through NOAH they have learned that the school years, especially junior high, can be difficult for albino children.
Barksdale, who has given seminars on coping, thinks parents must instill in the child a sense of self-worth and esteem that becomes unshakable. "If they're constantly worried about their esteem, if physical differences are the only things that matter in life, then they'll never reach their full potential," he said.
Before NOAH, many people with albinism said, they had never talked to another person who had the condition. They felt isolated and insecure. "Joining NOAH changed my outlook," said Virginia Small. "I didn't know whether other people with albinism had good jobs or were on welfare. Then I found out that many were highly intelligent and highly motivated. And a lot of the paranoia I felt is gone.
"NOAH has given me the chance to give to young people something I never got when I was their age: a role model and a sense of self-esteem. It has also given me more confidence, because it makes you feel much better about yourself to know you're not the only person out there like you."
Judy Licht is a Washington writer. More Information
The National Organization of Albinism and Hypopigmentation, 1500 Locust St., Suite 1816, Philadelphia, Pa. 19102. 800-473-2310.