Pranav, a young boy from Salem, Tamil Nadu, has been living with Fibrodysplasia Ossificans Progressiva (FOP)—a condition that turns soft tissue into bone, limiting movement and posing severe health risks. In recent months, his journey took a critical turn when he experienced multiple falls that resulted in a head injury, leading to neurosurgery.
By July 2025, Pranav returned for a follow-up consultation at Amara Hospital with Dr. Vrisha Madhuri, supported by FOP Trust India. His family brought him in to evaluate his recovery and to get further advice for prevention.
Dr. Madhuri conducted a detailed assessment and shared several important care steps:
- Footwear adjustment: He was advised to wear correctly sized footwear and walk slowly to minimize the risk of further falls.
- Helmet use: Given his history of head injury and difficulty in arm movement, a helmet was strongly recommended to protect him during unintentional trips or stumbles.
- Breathing exercises: Spirometry and deep breathing practices were advised to strengthen his respiratory health.
- Dental hygiene education: As his mouth opening was reduced to under 1 cm, maintaining oral health became essential.
His Cajus score, used to measure deformity progression, showed serious limitations. But the family’s commitment to following protocols—and the Trust’s consistent follow-up—ensured he stayed on track with his care.
FOP Trust India not only helped with appointment scheduling but also coordinated future follow-ups and educational materials for his safety.
Pranav’s story is a reminder that recovery with FOP is never linear. It requires vigilance, early intervention, and the support of a community that understands. His resilience continues to inspire others in the FOP family across India.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
