‘What happened to
your son’s knees?’
That question and others
Treatments, but no cure yet
have spurred Ethan Sunio's
mother to action and education
about the disease vitiligoBy Helen Altonn
Star-BulletinDottie Sunio was waiting for her husband outside the Pearlridge Theaters with their two sons when one of them, 6-year-old Ethan -- who was watching people rush by -- asked if there was anyone else who has what he has.
He pointed to white splotches on his knees.
Sunio said she realized that Ethan had never seen anyone else with the disease vitiligo (pronounced viti-lie-go).
Yet the child's dermatologist, Dr. Doug Johnson, says it's "not that rare. It affects 0.5 percent of the general population." The National Vitiligo Foundation pushes the number to at least 1 percent of the population.
Johnson said he has one or two new or follow-up cases a week.
Ethan's question prompted Sunio to form a support group for parents of children with vitiligo to discuss treatments and help others understand the disease.
"Even adults say, in public places, 'What happened to your son's knees?'" she said. "Even neighbor girls tease him."
The autoimmune disease, which entertainer Michael Jackson said also afflicts him, is characterized by a loss of pigment cells, primarily in the skin but also in the eyes and other body openings.A handsome, athletic boy, Ethan fell and skinned his knee in May 1997, his mother said. "When the scab came off, there was no more color."
Their dermatologist at that time (not Johnson) told them to return in six months if there was no change, Sunio said. Instead of going away, the white patch became larger, she said.
Ethan was diagnosed with vitiligo in May 1998, she said. "Initially, we tried applying mild steroids but had no success."
White patches have spread up his leg and elbows and are starting on his hands and feet. He's also getting a little spot on one eye, she noted.
He had a tiny spot previously under an eye that "amazingly re-pigmented," she said.
It isn't known exactly what causes the disease, but it's thought to be genetic or associated with an inactive thyroid or deficient vitamin B-12, she said.
Tests showed Ethan's thyroid and B-12 levels were fine, she said.
"We know people with vitiligo, (and) 3 to 7 percent of them have offspring with vitiligo, so there seems to be a link genetically," Johnson said.
He said the disease occurs before age 10 in about one-fourth of cases, before age 20 in one-fifth of cases and after age 42 in 10 percent of cases. About twice as many females as males get vitiligo, he said.
Most vitiligo patients are "otherwise healthy," he said. However, he said, "it's psychologically a difficult problem," and there are a few associated diseases, such as inflammation of the retina, pernicious anemia, thyroid and other autoimmune disorders. Increased incidence of skin cancer also is a risk in areas of pigment loss, Johnson said.
Ethan, whose favorite first-grade activities at Our Savior Lutheran School are "math and recess," said his white spots don't bother him. And they aren't holding him back, if his big collection of soccer and baseball trophies is any indication.
"He's a real good soccer player ... very athletic," said his father, Alan, who coaches Ethan's soccer team and coordinates the Great Aloha Run and many other community events.
Ethan's mother, who teaches computer science at Leeward Community College, said she's "always amazed" about Ethan. "He's such a smart kid. In his SAT tests last year, he scored in the 99th percentile."
Still, when Ethan is outside his usual environment, he asks to wear long pants, she said. "I know he does this so people don't ask about his legs."
She said her son Aaron, 11, reminds Ethan to put his cream on, and he's "very helpful and protective," particularly when other children are around.
Since Ethan's diagnosis, Sunio has heard of others who have the disease. But she said they cover it up.
"They try to use makeup. It's real hush-hush. People don't talk about it because they don't know anything can be done."
Education and information are primary goals, she said, noting an Internet support group is compiling a list of specialists across the country.
She said the foundation plans to shine a spotlight on the disease with a conference in March in San Francisco to coincide with a national dermatology conference.
For more information regarding the vitiligo support group, call Dottie Sunio at 455-7574 or e-mail her at sunio@hawaii.edu. Support group info
There are several
By Helen Altonn
treatments, but a cure
is yet to be found
Star-BulletinVitiligo isn't curable, Dr. Doug Johnson says.
But pigmentation may be restored in some patients with a therapy that uses ultraviolet light A to stimulate the color-making cells. Cream or oral medicine is used to increase sensitivity to that wavelength.
"It re-pigments about two-thirds of patients who do it," said Johnson, a dermatologist.
It may take two or three treatments a week for a year, he said. "Some people seem to do well and stop and do fine. Some are maintained on regular treatment. Some need once-a-month or once-a-week treatment."
The treatment usually isn't used for patients younger than 10. However, Ethan Sunio's pigment loss was spreading rapidly, and his mother, Dottie Sunio, said she "chose to be proactive in this and not let this just happen." Johnson presented the case at a Dermatology Association case conference in December 1998.
About 20 dermatologists examined Ethan, reviewed his history and agreed he should have "the light box," Sunio said.
He started treatments in January, continuing once a week for three months while his parents and Johnson battled with the Hawaii Medical Service Association over insurance coverage.
HMSA had refused to pay for the treatments, arguing they were for cosmetic purposes unless the spots were on the face, Sunio said. "This is very disfiguring. I'd like to have this person (who was refusing coverage) have it and then say it's cosmetic."
The insurance carrier reversed its decision this month and agreed to pay for all the treatments back to January.
Sunio, meanwhile, learned of a new cream treatment through a National Vitiligo Foundation support group of about 750 people on the Internet. She said it's available only through Northwestern University. Although it contains natural products, it hasn't been approved by the Food and Drug Administration, she said.
She said studies at the University of Hamburg in Germany found patients with vitiligo have an overabundance of hydrogen peroxide in their skin, which the cream succeeded in neutralizing when used with ultraviolet light exposure.
She has used the cream twice a day all over Ethan's body for about a month. No freckling has occurred yet, but it takes about four months, she said. She is also waiting for a more powerful ultraviolet light to arrive at Johnson's office so light treatments can be resumed with the cream.
Johnson said PUVA treatments generally cost about $24 to $28 each, and the medicine can run up to $10-$15 or more, just for pills. The cream she's using on Ethan now costs about $35 per jar, plus shipping, Sunio said.
Other treatments range from topical cream with incidental sunlight and steroid cream at night to complete de-pigmentation, such as reportedly was done in Michael Jackson's case.
People with vitiligo over more than half of the exposed areas of their bodies generally are candidates for depigmentation of the remaining pigmented areas.
Makeup and stains and surgical therapies are other options, Johnson said.
