In July 2025, FOP Trust India continued its mission of supporting families affected by Fibrodysplasia Ossificans Progressiva (FOP) by arranging several consultations and guiding families through essential care recommendations.
Sanskriti’s Case – Uttar Pradesh
Sanskriti, a 10-year-old from Uttar Pradesh, experienced a flare-up and was referred to Dr. Vrisha Madhuri at Amara Hospital for an online consultation. Dr. Madhuri provided a detailed care plan that included:
- Medication to manage the flare-up
- Daily use of a spirometer
- Singing exercises for improved lung capacity
- Helmet usage to avoid head injuries
- A comprehensive FOP safety protocol
Sanskriti’s family received full consultation support from FOP Trust India, and her details were added to the national FOP database for continuous tracking and follow-up.
Keshav’s Story – Maharashtra
Keshav from Maharashtra was experiencing recurring flare-ups and discomfort. FOP Trust India arranged an online consultation with a specialized doctor, who provided respiratory care recommendations and pain management strategies tailored to Keshav’s condition.
Fiza’s Update – Uttar Pradesh
Fiza, another young patient from Uttar Pradesh, was evaluated for worsening movement limitations. The consultation emphasized the importance of gentle mobility exercises, preventive posture care, and flare-up management.
Sukhveer’s Support – Punjab
Sukhveer, from a rural part of Punjab, was connected to a regional doctor familiar with FOP protocols. The Trust provided detailed resources to the local healthcare provider and supported Sukhveer’s family in understanding how to safely manage his symptoms at home.
Aahana’s Assessment – Telangana
In Telangana, 7-year-old Aahana underwent her first detailed evaluation with FOP experts. Her parents were educated on flare-up prevention, home safety modifications, and respiratory health monitoring. FOP Trust India also followed up with a resource kit to help them better manage daily care.
To learn more, visit: https://foptrust.org
For international resources, visit: https://www.ifopa.org
