There are many reasons for why I, along with my family decided to start this nonprofit. However, the most important one is my twin sister. Seeing Kaavya struggle with the one of the world’s most painful and hard to diagnose diseases was life altering. I saw first hand the effects it has both on the person experiencing it, and their family. I want others to hopefully come across this website and use it as a resource for support and awareness of CRPS so that people can have at least a little bit of an easier time.
Kaavya’s Story
Her story began one November during a Friendsgiving gathering, when my sister suffered a head injury while playing hide-and-seek. She was found lying on her back with a deep cut above her eyebrow, bleeding heavily. She was rushed to the emergency room, where the physician stitched the laceration and discharged her. No MRI was performed, and we received little guidance about possible concussion symptoms or follow-up care. My parents believed the worst was behind us.
The following Tuesday, my sister became dizzy during a tennis lesson. Another physician suspected a concussion, and although an MRI showed no bleed or other serious injury, she was instructed to avoid sports for six months. My parents immediately withdrew her from all athletic activities and reduced her school workload, trusting that rest would allow her to recover.
Instead, after those six months, everything began to deteriorate. We were told she was experiencing delayed-onset concussion symptoms, which can occur in some younger people. She developed frequent migraines, dizziness, and blurred vision.
Hoping to lift her spirits, our family took a trip to the beach. While riding a bicycle on the sand, she scraped her foot. What seemed like a minor injury soon became unbearable. The pain steadily intensified until she could no longer put weight on her foot.
Over the following months, we visited pediatricians, orthopedic specialists, physical therapists, podiatrists, and neurologists, searching for answers. Each specialist ruled out another possibility, yet no one could explain why such a small injury caused excruciating pain. One physician placed her foot in a brace, hoping to promote healing, but she remained in it for nearly six weeks. When the brace was finally removed for physical therapy, both the therapist and I noticed that her lower leg had begun to rotate inward from prolonged immobilization. We panicked.
Despite her worsening condition, every test appeared normal. Orthopedic imaging showed no structural abnormalities, and nerve conduction testing by a neurologist revealed no damage. Yet even the light breeze from an air-conditioning vent or the weight of a thin cotton blanket touching her foot made her scream in pain.
Her pediatrician recommended that we seek a multidisciplinary evaluation at CHOP. Unfortunately, the wait for an appointment was several months. Watching my sister suffer became unbearable. One day, when she was crying uncontrollably from the pain, my parents took her to the emergency department at CHOP instead.
That decision changed everything.
Within hours, the specialists recognized her condition as Amplified Musculoskeletal Pain Syndrome (AMPS), commonly referred to as Complex Regional Pain Syndrome (CRPS). They explained that her nervous system was misfiring, causing her brain to amplify even minor pain signals into severe, debilitating pain.
She was enrolled in CHOP’s intensive interdisciplinary rehabilitation program, which combined physical therapy, occupational therapy, psychological support, and pain management. She had to re-learn how to walk. After the first day, they put her on modified crutches. After the second, she could put some weight on her foot. After the third, they only gave her one crutch. After the fourth, she was off crutches entirely. Finally, after a month of treatment, my sister—who had been unable to walk independently for six months—walked out of the hospital on her own. Soon afterward, she returned to sports, joining both a fencing club and her school’s fencing team.
Although we were relieved, we also learned that CRPS is a chronic condition. Rather than curing it, the goal is to recognize flare-ups early and use the strategies she learned to prevent the pain from taking control of her life.
However, when I look at my sister today, I don’t see a girl living with CRPS. I see a girl who is captain of her fencing team, a girl who flies planes, a girl training to join the military, and who rallies through challenges with a smile on her face. She still has to live with symptoms that will never go away, but she doesn’t let it define her. That, I feel embodies every one of the fighters battling CRPS and I hope it inspires others to keep fighting.