For Shraya Pokhrel from Nepal, the first online consultation with Dr. Vrisha Madhuri was a turning point. Network issues and scheduling challenges could not stop the session, where Dr. Madhuri assessed his condition, prescribed medication, and explained the FOP protocol. For his father, the consultation brought much-needed clarity. His doubts about the disease and treatment […]
September’s awareness activities highlighted the power of both partnerships and grassroots action. Pamphlets were distributed during a government health and welfare camp in Vellore City, bringing FOP knowledge directly to families who may otherwise never hear of the condition. These efforts reduce the risk of harmful procedures and promote early diagnosis. Simultaneously, partnerships with groups […]
The field team spent the week building partnerships and strengthening patient support systems. Meetings with Vellore Lions Club focused on organizing awareness programs, while discussions with Rotary Club officials explored future MoUs. Talks also began with the Reach India Foundation, signaling potential collaboration for community support. On the organizational side, the team worked on database […]
The third week of September showcased the importance of timely consultations and consistent reviews in FOP management. On September 22, Shraya Pokhrel from Nepal had his first online consultation at Amara Hospital with Dr. Vrisha Madhuri. Despite technical challenges, the session was completed successfully. Dr. Madhuri prescribed medication, explained the FOP protocol, and answered his […]
Families living with FOP often struggle with uncertainty, especially during flare-ups. The International FOP Association (IFOPA) bridges this gap by offering global support tools that guide safe decisions. From emergency medical cards to step-by-step flare-up protocols, IFOPA resources are designed to prevent harmful actions like biopsies or nerve blocks. In September, families like Shraya’s from […]
The final week of September highlighted both direct patient care and organizational growth for FOP Trust India. On the patient front, Sanskriti from Uttar Pradesh had a follow-up consultation after her flare-up. Encouragingly, her range of motion showed improvement, and she was prescribed another course of medication. Meanwhile, Geetika from Andhra Pradesh reported better recovery […]
For families living with FOP, the first consultation often feels like the most important step. This was true for Shraya Pokhrel, a child from Nepal, who recently had his first online consultation with Dr. Vrisha Madhuri at Amara Hospital. Despite challenges like network issues, a packed hospital schedule, and the complexity of Shraya’s symptoms, the […]
Awareness is more than information—it is action that protects lives. This week, partnerships and patient stories highlighted how awareness shapes better care. Through discussions with the Lions Club Vellore, FOP Trust India expanded its reach into community programs that will run through 2025–26. These partnerships ensure that schools, hospitals, and families gain exposure to safe […]
This week showed the importance of both immediate treatment and long-term planning. On September 15, Sivaji from Andhra Pradesh was reviewed after new flare-up concerns. His earlier tests had not revealed clear results, but new X-rays suggested features of FOP. To ensure accuracy, Dr. Vrisha Madhuri recommended further testing and sought additional input from a […]
The International FOP Association (IFOPA) continues to serve as a lifeline for families worldwide. Its global support network provides practical tools, emergency guidelines, and educational resources that families can trust in moments of uncertainty. In September, families like those of Akshat from Rajasthan and Helal from Bangladesh relied on IFOPA’s flare-up protocols to guide safe […]
