Clearwater woman fights disease that's only skin deep

CLEARWATER — Stella Pavlides was 22 when the white patches showed up. A cosmetologist with flawless olive skin, her body suddenly looked speckled with white splotches of different sizes.

"I used to have flawless skin. Now I look like a patchwork quilt," Pavlides said. "Suddenly I had all these white spots and didn't know what was going on."

Pavlides, now 65 and a resident of Clearwater since 1994, found out, after seeing numerous doctors in Manhattan, N.Y., that she had vitiligo.

Simply defined, vitiligo is a skin disorder — now thought to be an autoimmune disease — causing the skin to spontaneously lose its color in splotches. The complex disease affects up to 2 million people of all races and ethnicities in the United States, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

The white patches on the skin are due to the loss of melanin, which is the pigment that determines skin color.

The darker the skin, the more noticeable the areas without pigment. The spots pop up on people's faces, arms, legs and many living with the condition become the object of stares from strangers or worse.

"People don't want to take money from me. They think what I have is contagious," Pavlides said.

It is not.

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In 1995, Pavlides founded the American Vitiligo Research Foundation from her dining room. She started the program to pay for research, but was conflicted.

"I was riding the fence because I'm an animal rights advocate," Pavlides said. "I wanted vitiligo research, but not on animals."

So she traveled to Gainesville to meet Wayne McCormack, associate professor of pathology and laboratory medicine at the University of Florida College of Medicine.

"He said if we funded the research, he'd use donated blood and skin from people with vitiligo," Pavlides said. "And he did."

In its 15 years, the nonprofit organization has given $177,000 toward vitiligo research at UF, Pavlides said. The money has come through fundraisers and donations. The ultimate goal is to find a cure.

One of the foundation's biggest fundraisers is its annual conference, which took place last weekend at the Hampton Inn, 21030 U.S. 19 N, Clearwater.

Since 2002, the conference has focused on children.

Another fundraiser, started in 2003, is Embracing Diversity, an annual calendar featuring kids with vitiligo.

"No other organization was focusing on kids with vitiligo," Pavlides said. "I tell the kids nothing's wrong with you. You happen to have vitiligo. God made everyone different.

Pavlides especially empathizes with teens who have vitiligo. She thinks they might be the most traumatized by the disease.

"Think about being a teenager looking for a prom dress," Pavlides said. "You don't even look at spaghetti straps. We help everyone, but focus on kids because they're most vulnerable."

She started the foundation with proceeds from the sale of her mother's condominium in Greece.

Pavlides works 60 or 70 hours a week for the organization.

For eight years, she did so without any pay. Now she draws a salary of $60,000, but still uses much of it for the organization and kids.

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Roxanne Knight grew up with vitiligo, but without the advantage of the yearly foundation conferences in Clearwater. She understands the real importance of Pavlides' work.

"I was 12 when I got vitiligo," said Knight, 45, of Wisconsin. "I played basketball and faked an injury to wear a knee pad and cover up the white spots. I met Stella in 2000 and wished her organization had been around when I was a kid."

Knight was so impressed, she joined the foundation board.

This year's conference drew nearly 100 people, including 31 children, for its three-day run.

"Kids get a huge dose of self-confidence at the conference," Knight said. "They're used to hiding. At the conference, they meet kids like them. They can decompress and be themselves."

Activities for the children at this year's conference included two activities at Westfield Countryside Mall: ice skating and building teddy bears at the Build-a-Bear Workshop there. They also went to Clearwater Beach for a ride on Captain Memo's pirate cruise.

While all the kids had fun and no worries about fitting in, they paid it forward by giving the teddy bears they made to residents of a local nursing home, Advanced Rehab and Health Center, 401 Fairwood Ave.

"The residents loved getting the bears from the children," said Diane Fried, the center's activities director, "and most of the residents have them in their rooms or are carrying them around."

Greg Parganos, Pavlides' son, still has the olive Greek skin untouched by vitiligo, but he volunteers as the foundation treasurer and understands his mother's dedication.

"I don't have vitiligo, but I have the genetics for it," said Parganos, 45, of Clearwater. "We get so many letters from parents saying what the yearly conference and the foundation has done to boost their children's self-esteem. That's what my mother does. That's all her."