Joshua navigates the ropes course at the Pediatric Pain Warrior Family Summer Camp
‘Just a Boy Living with Chronic Pain’: But He’s Changing the Future of Medicine
By Christie Cox
When Joshua Contreras first held in his hands a 3D-printed replica of his own brain—the result of two hours he’d previously spent inside an MRI machine for brain scans as part of a clinical trial—he stared at it for days.
He was in the midst of a month-long hospital stay, malnourished and unable to eat, being treated for a condition no teenager should endure called superior mesenteric artery (SMA) syndrome. But that brain model didn’t just represent his participation in a chronic pain research study. It was a symbol of hope, contribution, and his place in something bigger than the pain or the tiny model he studied in his hands.
“I just stared at it—seeing all the grooves, the underdeveloped areas. It was cool,” Joshua quietly recalls. “It made me want to learn more.” Joshua navigates the ropes course at the Pediatric Pain Warrior Family Summer Camp.
Joshua is 17 years old and lives with myopathic Ehlers-Danlos syndrome, gastroparesis, postural orthostatic tachycardia syndrome (POTS), chronic migraine, and SMA syndrome. But he’s also a gamer, a gardener, and someone who finds comfort in Discord chats with friends he met through pain camp.
And now, he’s a research participant whose contributions are shaping the future of pediatric pain care.
THE BEGINNING: FROM MISUNDERSTOOD TO MOTIVATED
His journey started years ago: As a young child, he experienced chronic pain that doctors brushed off as “growing pains.” While volunteering in Joshua’s kindergarten class, a fellow parent who worked as a physical therapist noticed Joshua’s thumb hyperextending and raised concerns with his mom. That eventually led to a diagnosis—but not before years of bouncing between specialists who called him “too complicated.”
“It’s hard when you wait six to 12 months to see a doctor just to be told they can’t help you,” shares Joshua’s mom, Lacie Stover. “Once the diagnosis was finally in his chart, it got easier. But that road? It was painful.”
And it wasn’t just physical pain—the isolation and lack of belief cut deep as well.
“I didn’t realize other kids weren’t going through this,” Joshua says. “They were just going through everyday sniffles. My daily pain was normal to me. But when people didn’t believe me or see it as ‘normal,’ that was the hardest part.”
So he seized an opportunity to take action.
ANSWERING THE CALL TO RESEARCH
When Joshua’s doctor at Stanford Medicine, Amber Noelle Borucki, MD, invited him to join the SPRINT (Signature for Pain Recovery IN Teens) study in 2023, Joshua and his mom said yes. Not because he thought it would fix everything—but because he wanted to help others.
Using brain scans, self-reported responses, sleep tracking, and other measures, the study sought to identify mechanisms, or a signature, to better predict why some teens with chronic musculoskeletal pain eventually improve—while others continue to experience persistent pain and disability.
The largely virtual nature of the study made it accessible. SPRINT included weekly virtual check-ins to track pain, mood, and other symptoms, and ultimately a traffic congested, four-hour drive from his home in Fairfield, California, to Stanford for scans.
The 3D-printed brain wasn’t just a cool souvenir. It was a turning point.
“It made me realize that even if I’m not getting better, research helps doctors get better at understanding,” Joshua says. “And that could mean someone else doesn’t have to suffer like I did.”
A DIFFERENT KIND OF CARE
Participating in SPRINT changed how Joshua viewed the health care system. “There are doctors who just see side effects, and when you tell them what you’re going through, they look at you like you are the side effect,” he explains. “But the scientists in the study? They were focused on our lives. They wanted to understand what we go through. The ways we coped.”
The study’s weekly survey check-ins asked questions about his pain levels; if he was able to participate in activities, go to school, or do chores; how restorative his rest was; and if he was able to keep plans and maintain friendships. They also asked about his mental health—anxiety levels, if he had any fears.
“It made me feel human, and that was everything,” Joshua says.
He’s hopeful the study’s findings will help others down the road. And he wants to help medical professionals and researchers understand how different people with pain align, and how their experiences vary.
“Even my small participation shows doctors there are real kids living every day with chronic pain,” Joshua says. “If scientists had to live for just one day in my body, I’d honestly feel bad for them. It’s exhausting. But maybe then they’d really understand.”
A NEW WAY TO CONTRIBUTE
Having learned from his first research experience that the more people who participate, the more information researchers have, Joshua recently enrolled in another study, also conducted through Stanford.
He’s excited that this study, TRAC-Pain (Targeted Real-time Assessment of Chronic Pain in Youth), is entirely virtual. Teens and young adults with chronic musculoskeletal pain wear a smartwatch for 12 weeks to track in-the-moment pain and function. The study’s goal is to create a “digital biosignature”—a real-time measure of pain.
“It’s 100% more doable being online,” Joshua says. “There are days I wouldn’t have been able to travel anywhere. On days I’m not feeling good or I’m in too much pain to drive, it’s nice to just be able to wake up and log in to participate.”
FINDING SUPPORT
Joshua has attended U.S. Pain Foundation’s Pediatric Pain Warrior Family Summer Camp several times—giving him lasting friendships and a support network.
“It helps knowing I can rely on people who just understand,” he says. “It’s different when someone doesn’t need you to explain what you’re feeling.”
He also finds comfort in physical distractions and creative outlets. “Gaming, gardening, watching movies, talking to people online—that all helps,” he shares. “Just getting into a Discord chat makes a difference.”
WHY HIS STORY MATTERS
Joshua lives with severe daily pain that he says generally starts at a seven on the 10-point scale. He’s tried a variety of treatments, finding medications, massages, and distraction therapy to be most helpful.
He’s currently not in school due to ongoing medical issues, focusing instead on pacing himself and learning the hard lesson of putting his health first. “I probably could push myself to go back and do too much,” he says, “but is it worth harming myself just to check a box?”
He plans to earn his GED later this year. His mom tells him regularly that “normal is only a setting on the washing machine.” On tough days, she reminds him that everyone has their own unique struggles they work through at their own speed—“just like everyone gets potty trained at their own pace,” Lacie says.
As he determines his pace, Joshua continues to give back—through camp friendships, research participation, and now, sharing his story. He wants to make a difference for others going through the loneliness and confusion of pain and a new diagnosis.
His advice for other teens considering joining a study? “Do it. Don’t be scared,” he urges. “There are people out there who understand, and someone might need to hear your story. Trust yourself. I was nervous, too—but it helped me. It meant something.”
As for what he wants researchers to understand: “Pain isn’t always visible. Just because I show up doesn’t mean I’m OK. I could be crashing, physically or emotionally.”
Joshua doesn’t claim to have all the answers. He’s not trying to be heroic. He just knows that his experience matters—and that by showing up, telling the truth, and answering a few weekly emails or wearing a smartwatch, he’s doing something powerful.
“I’m just a boy living with chronic pain,” he says.
But what he may not fully realize yet is he’s also a boy helping to reshape how the health care system views individuals navigating pain like him—for generations to come.