Every week, families affected by Fibrodysplasia Ossificans Progressiva (FOP) reach out seeking answers, reassurance, and support. Behind every name is a journey of courage, uncertainty, and a desire for better care. This week’s updates reflect how consistent medical support, awareness, and timely intervention can make a significant difference in the lives of those living with this ultra-rare condition.
New Assessment and Diagnostic Guidance
Sivaji, a newly referred patient from Tamil Nadu, visited Amara Hospital after being directed there by a doctor from Apollo Hospital, Chennai. While he showed no signs of the classic big toe deformity often associated with FOP, an X-ray revealed signs of myositis. Dr. Vrisha Madhuri, a leading FOP specialist, assessed his condition and advised a genetic test for further clarity. This test will help determine whether he carries the ACVR1 gene mutation that causes FOP.
Oral Health and Flare-Up Preparedness
Geetika from Nellore, Andhra Pradesh, also had her follow-up consultation at Amara. She reported difficulty opening her mouth—likely a result of jaw-related ossification. Since she recently experienced a flare-up, Dr. Vrisha provided an emergency medication prescription and strongly advised the family to begin treatment within 24 hours of any future flare-ups. Oral hygiene tips were also shared to help manage her condition more comfortably.
In both these cases, FOP Trust India stepped in to cover consultation costs, ensuring families did not delay seeking essential care. The patients’ families managed X-ray and medication expenses, demonstrating a joint commitment to timely medical action.
Online Support from Across India
Lakshya Kos, a patient from Assam, accessed an online consultation during a flare-up. Dr. Vrisha prescribed appropriate medication and provided guidance on how to monitor and manage the symptoms. This case highlights the growing reach and importance of virtual care—especially for patients from distant regions where specialized FOP expertise is unavailable.
Empowering Families with Protocols
Young Arzaan from Nagpur also visited Amara Hospital this week. His parents had numerous questions about daily care, symptom tracking, and what to expect next. During the consultation, they received a copy of the FOP protocol—a critical resource for navigating flare-ups and emergencies. Medications were prescribed for potential future flare-ups, with clear instructions to begin use only after confirming with the medical team.
The family covered the full cost of the consultation, underlining their proactive approach and trust in the guidance provided.
The Power of Responsive Support
These stories reflect the powerful role that coordinated care and patient education play in managing FOP. Whether it’s a first-time diagnosis or a recurring flare-up, timely action, expert advice, and compassionate community support are what help families stay one step ahead of the challenges.
As always, FOP Trust India remains committed to ensuring that no patient, regardless of geography or financial background, feels alone in this journey.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
