Twenty-year-old Chelsey Anderson seems like the picture of health. She likes that.
"I'm young with this huge disability, this huge illness. I don't want to look like I'm sick even though some days I need my handicap parking pass or my walker or my cane," Anderson said.
In her sophomore year of high school, the star athlete was stopped in her tracks by multiple sclerosis.
"In my first attack I was fully paralyzed, blind in one eye, my lungs collapsed. It was a huge episode," she said.
No one knows what causes MS, but Chelsey may be part of a hidden population of children living with the condition. There's evidence at least five percent of adults had their first attack in childhood.
Now the National MS Society is recruiting children with multiple sclerosis for a study. The center closest to our region is located at the University of California San Francisco. The researchers are looking for clues to the causes of MS by tracking genetics and environmental exposures.
Diagnosing MS in kids is difficult said Seattle Children's Neurologist Dr. Raymond Ferri.
"I could easily see the first one or two attacks, especially if they're mild, being missed," Ferri said.
Symptoms include weakness, numbness, blurred vision, and balance problems. There are others in children.
"One clue might be change in school performance. Because there can be cognitive symptoms," he said.
MS can cause headaches in kids.
"It's usually not headaches alone though. They usually have maybe double vision or some other symptom that goes along with it," Dr. Ferri explained.
He said just knowing how many children have MS would be a step forward. Right now there is not an adequate data base of cases in kids.
"They're seeing a neurologist in Spokane or Yakima and so we're not getting a full sense of what's going on out there," he said.
Closing in on the mystery of MS will help young patients, like Chelsey. She lives everyday knowing a relapse can strike without warning.
"Just kind of hope for the best, but plan for the worst," she said.
Janace Hart, Research Project Manager at UCSF Regional Pediatric Multiple Sclerosis Center asks families who are looking for more information to email the center.