"I'll tell you what to call this story," says June Williams authoritatively, with one hand on her hip. "Call it, 'Living With Vitiligo -- Trying To Be Normal.'
"I get tired of people asking me why I don't keep it covered up. I get tired of men who lose interest when they find out I have it ."
It is vitiligo, a little-understood disease that causes one's skin to lose color. Although if affects whites as often as blacks -- 2 to 4 percent of the U.S. population suffers from it -- vitiligo is much more obvious and therefore traumatic in those with dark skin. The loss of color almost always occurs in uneven patches that resemble burn scars. The disease causes emotional rather than physical problems, according to Dr. Pearl S. Grimes, director of Howard University Hospital's vitiligo clinic.
Williams, 29, lives with her parents in a neat brick house in Northeast. She's the outspoken nieghborhood cutup. Her friends say you can hear her coming from blocks away.
But Williams will tell you she's not always laughing. "I started getting vitiligo when I was 18. I had just finished high school and was getting ready to start college (Federal City College, now the University of the District of Columbia)," she recalls. The first white spots appeared on her hands and face. Friends directed her to a local dermatologist who gave her psoralen pills and lotion and told her to get exposure to sunlight or ultraviolet light.
Psoralen, the standard treatment for vitiligo, is thought to stimulate the growth of new pigment cells. Sunlight is believed to draw these new cells to the surface of the skin. This treatment, however, is slow and effective in only about 40 percent of patients. Other treatments are in the experimental stage.
The patches on William's face -- but not her hands -- responded to the treatment.Four years later she stopped the treatment because the untraviolet light caused her hands to blister and swell, preventing her at times from doing her job at the post office -- working with the lettersorting machine. "They threatened to fire me," she recalls.
She tried, but discontinued, treatment to bleach her skin. The process was slow, "the waiting was agony . . . . I decided to let Mother Nature take its course." In addition, she didn't believe she was psychologically ready for such a drastic change.
A year later, in 1975, Williams married, and, she says, the marriage was traumatic. The vitiligo got worse. In the nearly three years she and her husband were together, her light brown arms turned completely white up to her elbows and large white patches appeared on her legs and chest. She is convinced that "this is a stress-related disease." Vitiligo specialists say stress may be a cause.
Relationships, Williams says, have been difficult to develop since her separation in 1977 (she and her husband were divorced last year). She feels men don't take a serious interest in her. Some are unkind. "I have 50 million brothers. They feel sorry for me and that makes me mad," she says.
"I do have one friend, Lewis, who's not embarrassed to be with me . . . . I've known him for 10 years. He holds my hand and makes me feel like nothing is wrong with me . . . . I want to marry and have kids, but people expect me to stay in a hole and not enjoy life."
Fortunately for Williams, tolerance and self-esteem have come with age. She says she's learning to cope. She puts up with cashiers who lay her change on the counter instead of putting it in her hand. "People can be polite," she observes, "but their body language conveys their discomfort. "When a child asks me about my skin," she says, "I will sit down and explain it to them." But she sometimes loses patience with adults. Once, when she was asked one time too many if she were contagious, she said she was and proceeded to trap the stunned inquirer in a bear hug.
Williams no longer worries about hiding her skin. When a coworker asked why she didnht wear long sleeves and a turtleneck in the summer, she gave the same answer anyone might -- "It's hot as hell in here!" She adds, "For my 29th birthday party (at the Chapter II disco), I wore a strapless dress with slits up both sides, and I had a good time."
Williams is planning to quit the post office and go back to UDC to work on a degree in psychology. She wants to counsel vitiligo patients and is pushing the Howard University Hospital's vitiligo clinic to begin a counseling program. Lack of funds has hampered that effort thus far.
Last year, Williams says, she was looking for others like herself who needed her help. She found Karen Scott.
"One night coming off the subway, I noticed June," says Scott. "I wanted to ask her (about vitiligo), but I was afraid she'd be offended." Worried that Williams would disappear quickly, Scott gathered her courage and asked, "How long have you had vitiligo?"
Williams flops over in her chair and starts giggling as she remembers Scott's nervousness. "She just took a deep breath and asked me. She said, 'I'm so scared. I just want someone to talk to.'"
Scott, 23, developed vitiligo on her hands and lips when she was 18. The patches are small and barely noticeable. The color has returned by itself in some places. She has found some new spots on her feet, but says she is not worried about it and is not seeking treatment.
Scott has not encountered the cruel treatment as Williams has, but she fears it may come if her vitiligo progresses. Unlike her friend, she is quiet and serious. "I wish I could be like June and laugh about it," she says.
The women provide moral support for each other. "Besides," says Williams, "she's my best Avon customer."