Youth Against Pain

It’s not unusual for a kid to open a lemonade stand. But when then-10-year-old Kassie Pinegar gave it a try, she wasn’t hoping to raise funds for a new toy. Instead, she donated everything—$350 total—to the National Fibromyalgia Association. It was a gesture of love and support that her uncle Randy Wold, who has fibromyalgia, will never forget.

And Kassie is not alone. The National Fibromyalgia Association has seen a surge in young people raising funds for the organization and raising awareness about fibromyalgia in utterly unique ways.

In Warrensburg Central School in New York, ninth-grader Emily Rae Morehouse and her friends organized a hat day and a dress-down day at school; students and teachers paid $1 or $2 for the privilege of participating—a project that raised $141 for the NFA, all because Emily Rae’s elder sister Samantha has FM. At Truman State University in Missouri, Kyle Betts and his brothers in the Sigma Tau Gamma Beta Chapter social fraternity held a Roktoberfest that raised $4,009.20 for the NFA—because Betts, whose father has fibromyalgia, wanted to raise awareness in his college community. And in South Carolina, Senior Girl Scout Akebia McCree chose fibromyalgia as the topic of her Gold Award: she’s designing a fibromyalgia badge that other Girl Scouts can strive to earn.

Many children and young adults are inspired to inform others about fibromyalgia because they have family with the chronic pain disorder. Others have fibromyalgia themselves. It’s unclear whether the numbers of young people who have fibromyalgia are actually increasing—many

“The National Fibromyalgia Association has seen a surge in young people…raising awareness about fibromyalgia in utterly unique ways.”

adult FM patients recall complaining of chronic pain and fatigue in their youth, only to be told they were suffering from “growing pains”—or whether the medical community is simply more willing to diagnose the disease in children and young adults. What is evident is these younger patients’ unwillingness to allow their diagnosis to defeat them.

Collin Sellers was 7 when he was diagnosed with fibromyalgia. There were a couple of years pain prevented him from attending school regularly—but then he and his mother went through a chronic pain program, and, as Collin recalls, “it changed my heart.” The program gave him tools to manage his pain and his attitude about it—and he did the rest. When Awareness Day rolled around one year, he decided to obtain proclamations from his local mayor and senator, the California governor, and—heck, why not?—the president of the United States.

One by one, the proclamations arrived in the Sellers family’s mailbox. And then one day the phone rang: the Office of White House Correspondence wanted to fax over the presidential proclamation (the original would be sent later by mail). The accompanying letter stated that the administration was “committed to finding better ways to diagnose, treat, and prevent” FM, says Collin’s mother, Donna.
 
“Collin and I will … hold fast to the promise of his words for the future of all who have this illness,” she adds.

And they won’t be alone as they wait—and work to make that wait shorter. As a generation of patients has done before them, today’s children and young adults are striving to increase understanding of fibromyalgia, to develop funding for research into fibromyalgia, and to not be defeated by fibromyalgia. Their dedication is energizing patients of all ages to do the same.