The second week of September showed how much progress can be made when families, doctors, and partners come together for FOP care. From patient consultations to partnership discussions, every step reflected teamwork and commitment.
Patient Consultations
On September 8, Sanskriti Gupta had an online consultation at Amara Hospital after developing a new swelling in her right thigh. Along with medication, she was advised to use a spirometer daily, wear a helmet for protection, and practice singing exercises to support her breathing. Her review is scheduled in 10 days.
The following day, Helal Wazim’s father reported a new flare-up. Dr. Vrisha Madhuri advised pamidronate therapy, guiding the local doctors on safe administration. Families like Helal’s continue to benefit from quick responses and expert guidance.
By midweek, Varsa’s grandfather shared that her pain had reduced but swelling persisted. She was directed for further advice. Meanwhile, Arzaan from Nagpur recovered well from his recent flare-up. His father also expressed interest in organizing a major awareness program in Nagpur and suggested participation in World Disability Day 2025 in Delhi.
Expanding Partnerships
On the advocacy front, discussions continued with Lions Club Vellore, who agreed to sign an MoU after their September meeting. This partnership will enable more awareness programs across 2025–26. Additionally, Harsh Maurya from Delhi, initially suspected of fibrous dysplasia, was guided toward proper genetic testing and consultation.
Building for the Future
The week also included backend efforts: updating the patient database with state-wise details, phone numbers, and email contacts. These updates ensure faster communication and support.
Together, these efforts show how each consultation, partnership, and awareness plan brings us closer to stronger FOP care across India.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
