Local effort targets Kawasaki Disease
By Joe Tash
Elizabeth Rodriguez was a sophomore at Torrey Pines High School in the fall of 2008 when she came down with a mysterious illness with symptoms that included a high fever, dizziness, a bad headache and painful, swollen joints. Her lips and tongue turned bright red.
“I could not get out of bed. It physically hurt to walk,” said Elizabeth, who ultimately missed two months of school. “That was the most pain I’ve ever felt.”
At first, doctors suspected a variety of ailments, from a bad case of the flu to mononucleosis. They even considered such diseases as lupus and leukemia. It wasn’t until the 10th day of her illness that they came up with a firm diagnosis — Kawasaki Disease.
Now Elizabeth and her mother, Del Mar Union School District trustee Comischell Rodriguez, have teamed up with other local families touched by Kawasaki Disease to raise money to achieve two goals — creation of a diagnostic test for the disease, and the establishment of an endowed research chair at UCSD.
“We’re just a bunch of moms and kids,” said Anna Lillian of Rancho Santa Fe, whose son, Alex, was diagnosed with Kawasaki Disease several years ago.
Rodriguez and Lillian are co-chairs of a fundraising gala planned for Sept. 25 at the La Costa Resort and Spa. Justin Guarini of “American Idol” will serve as master of ceremonies, and the event will include a live auction of donated items.
Kawasaki Disease is named after the Japanese pediatrician who first described the illness in medical literature in 1967. The illness typically strikes children less than 5 years old, although teenagers such as Elizabeth can also contract Kawasaki Disease.
The disease causes inflammation of the body’s blood vessels and can lead to permanent heart damage if left untreated.
According to Dr. Jane Burns, who leads the Kawasaki Disease Research Center at UCSD and is one of the nation’s top experts on the disease, children treated within 10 days of contracting the illness stand the best chance of avoiding permanent damage to their coronary arteries.
Of those children who are not treated for Kawasaki Disease, said Burns, some 25 percent develop aneurisms in the vessels that feed the heart, compared with 5 percent of children who are treated.
While there is currently no definitive test for Kawasaki Disease, Burns said a diagnosis can be made if the child has persistent fever, and four of the five following symptoms: bloodshot eyes, bright red lips and tongue, enlarged lymph nodes in the neck, red and swollen hands and feet and a red rash.
Across the United States, some 4,000 to 5,000 children are diagnosed with Kawasaki Disease each year, although many more cases are likely undiagnosed, said Burns. In San Diego County, about 100 children are diagnosed with the illness each year.
Children who are diagnosed with Kawasaki Disease are treated with intravenous gamma globulin, which Burns said is very effective in reducing the inflammation, and preventing permanent heart damage if administered in time, as was the case with Elizabeth and Alex.
While the cause of Kawasaki Disease is unknown, Burns said researchers believe some children are born with a genetic susceptibility for the disease. The disease itself is triggered when the susceptible children encounter an unknown agent, possibly a virus. Most cases occur in the winter or spring, she said.
Rodriguez, Lillian and their group of volunteers are seeking to raise the first $500,000 toward establishment of the endowed chair at UCSD, which will cost a total of $2.1 million. The research position would be established in Burns’ name in recognition of the 30 years she has spent researching the disease and treating its victims.
“This disease can be fatal, it’s very important people understand this,” said Lillian.
If a diagnostic test can be developed, said Rodgriguez, children can be treated more quickly, reducing their suffering from the symptoms and the likelihood of permanent heart damage. The money the group is trying to raise, she said, is a “very small price to pay for saving so many children’s lives.”
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