In August 2025, two young patients, Anushka from Rajasthan and Akshat from Jodhpur, showed the many faces of living with Fibrodysplasia Ossificans Progressiva (FOP). Their stories highlight how timely medical guidance and trust-supported care can make a difficult journey a little lighter.
Anushka’s Strength Through Stiffness
At just 18, Anushka has faced FOP’s challenges head-on. Her first swelling began on the head, and slowly stiffness spread to her upper limbs. A month ago, she underwent a tooth removal, which triggered swelling of her jaw and neck, leaving her unable to eat or drink easily.
During an online consultation with Dr. Vrisha Madhuri, Anushka was carefully assessed. Her CAJIS score measured at 12/30, reflecting severe restrictions. To bring relief, Dr. Madhuri prescribed a course of Prednisolone with tapering doses and supportive medication. The Trust arranged the consultation, ensuring her family could focus on care rather than costs.
Akshat’s Diagnosis and Early Steps
Two-year-old Akshat’s journey is just beginning. Genetic testing confirmed FOP (mutation c.617G>A), and his family reached out for guidance. Despite painful swellings on his back, Akshat currently has good mobility and full jaw opening—crucial advantages for a child so young.
Dr. Madhuri recommended preventive medication, including Montelukast and short courses of Prednisolone. She also advised diagnostic imaging to guide future care. For Akshat’s parents, this consultation marked a turning point—from uncertainty to having a structured care plan.
Shared Lessons
Both stories reflect an essential truth: early guidance and consistent follow-up transform patient care. With FOP Trust’s support, families like Anushka’s and Akshat’s don’t have to face this rare condition alone. Each consultation adds not only medical advice but also hope, strength, and a path forward.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
