A Maze of Symptoms Leads to Perthes Disease Diagnosis

Sixteen-year-old Annabelle Lindstrom has been a headstrong child as long as her parents, Angie and Mark can remember. Her Perthes disease diagnosis started literally with a maze.

On the day she first started noticeably limping at age four, she insisted she was fine. When the pain had her crawling a few days later, she still shook it off.

“Annabelle’s dad and I finally decided to set up a play date for the next day at an indoor maze,” Angie said. “We honestly couldn’t tell whether she was pretending or faking an injury – but we knew we’d know once we were at the maze.”

Annabelle made her way through the maze but hobbled the entire time.

Armed with a few days of observation and a video of her limping, Angie and Mark took Annabelle to her pediatrician to determine the cause of her pain.

The pediatrician attributed her pain to transient synovitis – a temporary inflammation joint lining, usually in the hip. Annabelle went home with anti-inflammatory medication and appeared to be better a few days later.

Still, Angie had a hunch there was something more behind Annabelle’s pain.

When Annabelle fell on the playground six months later and her limp returned, Angie reached out to rheumatology and orthopedic specialists to dig deeper.

Gillette’s orthopedics specialists were able to see Annabelle two days later. A series of tests and scans confirmed Annabelle had Perthes disease.

Perthes disease is a rare childhood condition where the blood supply to the femoral head – or the ball part of the hip joint – is disrupted, causing the bone to become inflamed and weaken.

Annabelle received Perthes care at clinics covered by her insurance provider, and while some treatments were effective, she kept running into the same problem. “Doctors kept telling me, ‘Your hip looks very pretty. I don’t know why you’re hurting’,” Annabelle recalls.

But she was hurting – and feeling frustrated and not heard. When she was able to return to Gillette, Annabelle met with Gillette’s pediatric orthopedic surgeon and hip preservation expert Alison Ditmer, MD.

“Dr. Ditmer listened to Annabelle,” Angie says. “She had Annabelle do some movements and was able to call out every pain point.”

Finding Perthes disease care and surrounding community is essential. Dr. Ditmer worked with Annabelle and her family on a plan to address her pain and fix the mechanics of her hip.

In late summer 2024, Annabelle had a periacetabular osteotomy, a surgical procedure that involved cutting the pelvic bone around the hip socket and rotating it to improve the hip joint’s alignment and stability and reduce stress on and pain in the joint.

Five screws that will eventually be removed help stabilize her hip while she undergoes weekly physical therapy over the next six months.

While she works to recover, Annabelle – like other kids her age – is excited to get her driver’s license.

She looks forward to Camp Perthes each summer for a chance to connect and build friendships with other kids who experience this rare disease.

And one of her greatest achievements is earning a black belt in karate. “I’ve been in karate for five years. It’s given me greater range of motion, strength, flexibility, confidence, and friends,” she shares.