Complex Regional Pain Syndrome (CRPS) is a rare, neurological chronic pain disorder resulting in severe and constant pain. CRPS affects approximately 200,000 children and adults in the United States and there is no known cure. Jenna, a current sophomore at Newbury Park High School, was diagnosed with CRPS in 2016. “CRPS typically develops after an injury or surgery, but the pain is disproportionately extreme in comparison to the cause,” Jenna said. “In my case, it all started with a dodgeball in my seventh-grade P.E. class.”
CRPS patients undergo a variety of treatments in an attempt to get the pain under control, including physical and occupational therapy, medications, and nerve blocks. Children who have this condition undergo the same treatments as adults, which can be very overwhelming as no one treatment works the same for every individual. After her stay in the inpatient rehabilitation program at the Children’s Hospital of Los Angeles, Jenna wanted to find a way to soothe pediatric patients undergoing the same therapies. It was then that she found the inspiration for her Gold Award project.
“Pediatric patients with Complex Regional Pain Syndrome have to go through many painful, tedious, and boring therapies to help with their chronic pain,” Jenna said. “One of those being desensitization therapy. Desensitization therapy is used to desensitize the limb affected by CRPS, as it usually becomes very sensitive to touch. This is done by rubbing the area with different textured fabrics or towels. This is very painful and isn’t fun for kids. Pain Pals provide a more colorful, intriguing approach to desensitization therapy by using a colorful stuffed animal as opposed to random fabric swatches or towels.”
With the intent to make desensitization therapy more kid-friendly and encourage children to follow through with their treatments, Jenna decided to create Pain Pals. These stuffed elephants are made out of six different fabrics of a variety of textures, both soft and rough. Through generous donations, she was able to purchase over $200 worth of fabric, stuffing, sewing materials, and copies of her sewing instructions. She held multiple workshops where friends and volunteers supported by cutting fabric and helping sew the elephants and made additional Pain Pals on her own.
Jenna created an Instagram (@pain_pals_for_crps) to share about CRPS, her journey with the pain disorder, and instructions for how visitors can make their own Pain Pals. Individuals from all over the world (who Jenna lovingly calls “CRPS Warriors”) have reached out to Jenna, thanking her for bringing awareness to this condition and expressing excitement over her Pain Pals. Her project resulted in the completion of 64 elephants that were donated to the Children’s Hospital of Los Angeles.
“My project has changed me a lot,” Jenna said. “The response I received on my Instagram page has shown me that something so simple can change the world. Although the majority of my project was really successful, I think the delivery of the Pain Pals was the best part. When I got to the rehab center at Children’s, there was a team of about 15 doctors and therapists waiting to see the Pain Pals that I had made. This was really gratifying and it was amazing to see how excited they all were to implement the Pain Pals into their program.”
“I have learned so much through my rollercoaster of two years, but I am proud to call myself a CRPS Warrior,” Jenna said. “I have persevered through good days and bad days, treatments and medications. CRPS doesn’t define me, but it is a part of me, and I have learned to embrace that.”
For more information about the Gold Award and the incredible impact that Girl Scouts are making in their communities and the world beyond, visit here.