Over the past week, FOP Trust India continued its tireless efforts to ensure that every family affected by Fibrodysplasia Ossificans Progressiva (FOP) receives timely, expert care and the emotional support they need. From hospital visits to remote consultations, each day brought a mix of challenges, coordination, and hopeful outcomes.
Hospital Collaboration in Chennai
The week began with a strategic visit to Tamil Nadu’s State Level Children’s Hospital in Egmore, Chennai. The FOP Trust team met with key figures—including the Director and department heads of orthopedics and genetics. The goal was clear: build a referral pathway for children who may show signs of FOP. The response was encouraging, opening the door to earlier diagnosis and care in the region.
Patient Follow-Ups: Ashik and Devananda
Ashik, a young boy from Chennai, experienced a painful flare-up in his elbow. His mother immediately contacted FOP Trust, and an online consultation with Dr. Vrisha Madhuri was arranged. Medication was prescribed and monitored closely. Likewise, Devananda from Kerala faced another flare-up and received timely medical guidance. Both patients responded well to the treatment and reported improvement within days.
Ashik’s family, facing financial constraints, received support from FOP Trust India for his consultation fees—another example of how the Trust steps in when needed most.
Continued Monitoring and Updates
By midweek, appointments were confirmed for both Ashik and Devananda at Amara Hospital for further review. Pranav from Salem had his appointment rescheduled at his brother’s request, and Ashok Joshi’s family from Maharashtra is awaiting genetic test results. Encouraging updates also came in from Geetika, Vansh, and Arzaan—all reported doing well after recent care interventions.
On July 17, both Ashik and Devananda had online follow-up consultations. Dr. Vrisha reassessed their condition, made medication adjustments, and advised reviews after two weeks—ensuring continued monitoring and peace of mind.
To learn more, visit: https://foptrust.org
For international resources, visit: https://www.ifopa.org
