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Local Conversation, Global Influence: How Rady Children’s Experts Are Helping to Innovate the Future of Care for a Rare Orthopedic Disease

Most health care professionals are accustomed to sharing their expertise with one patient at a time. But recently, two such professionals — V. Salil Upasani, MD, co-director of the International Center for Pediatric and Adolescent Hip Disorders at Rady Children’s Hospital-San Diego and an associate clinical professor at University of California San Diego School of Medicine, and Chrissy Paik, BS, MPAP, PA-C, a physician assistant specializing in hip conditions within the Rady Children’s Division of Orthopedics & Scoliosis — had the opportunity to break from the norm and address a crowd of more than 250 in partnership with the Perthes Kids Foundation. The Southern California-based nonprofit advances education, advocacy and engagement efforts surrounding Legg-Calvé-Perthes disease, “a condition that affects the blood flow to the hip joint in an otherwise healthy child, usually around 5 to 8 years of age,” explains Dr. Upasani.

The decreased blood flow leads to progressive weakening of the joint. In turn, this causes symptoms including pain, limping or limited mobility. Although most kids can eventually recover and avoid future issues with treatment[1], Dr. Upasani notes there is still a long way to go until the medical community fully understands the disease and optimal therapies. “While the disease was described more than 100 years ago, we still know very little about what actually causes it. Because the condition is quite rare, pediatric orthopedic surgeons have formed an international group to combine our cases and study our patients’ outcomes after surgical and nonsurgical treatments.”

That group, the International Perthes Study Group, is how Perthes Kids Foundation Founder and CEO Earl Cole and Dr. Upasani became acquainted more than two years ago. “Earl found me on the IPSG website,” Dr. Upasani recalls. “He asked me to be on the board of directors and help with their patient and family educational activities.” Cole, who won season 14 of “Survivor” in 2007, had Perthes as a child, and established the foundation to increase awareness, support research and bring together families facing the disease. One of the organization’s bonding initiatives, Camp Perthes International©, invites kids and their loved ones to enjoy special experiences and fun activities, as well as share stories and learn more about treatment approaches, prognosis and life with Perthes. At one of their latest camp gatherings, Cole invited Dr. Upasani and Paik, both of whom are deeply involved in the care of Rady Children’s patients with Perthes, to facilitate a Q&A session with about 70 children and their family members.

“We discussed the etiology of the disease, cutting-edge treatment strategies, what to expect for patients in various stages of the disease and long-term outcomes in our patients,” says Dr. Upasani. “I was also interested in learning from the patients and their parents about the real-life questions and concerns that they have.”

“This camp was a unique setting to connect with children with Perthes outside of the exam room, and to see them just be kids,” Paik muses. “How often do medical professionals get to do that? I think that was the best thing about being a part of the camp.”  Attendees’ candid interactions with Dr. Upasani and Paik will have a direct influence on Perthes disease research benefiting the approximately 500 Rady Children’s patients being followed for the condition, as well youth around the world — Dr. Upasani will take his findings to the IPSG to guide research efforts in the future.

To learn more about Perthes disease and research happening at Rady Children’s, visit our website.

[1] https://orthoinfo.aaos.org/en/diseases–conditions/perthes-disease