
August brought several important medical updates for children living with Fibrodysplasia Ossificans Progressiva (FOP) across India and neighboring regions. With timely consultations, prescription adjustments, and ongoing follow-ups, families received much-needed clarity and relief.
Anushka’s Case – Managing Severe Jaw Stiffness
Eighteen-year-old Anushka from Rajasthan faced painful swelling and stiffness after a tooth extraction. She struggled to eat and drink, with redness and swelling below the jaw. After her assessment, Dr. Vrisha Madhuri prescribed a tapering course of Prednisolone with supportive gastric protection to reduce inflammation and restore comfort. The Trust arranged the consultation fees, ensuring her family could focus on care rather than financial stress.
Samad’s Case – Flare-Ups and Osteochondroma
Six-year-old Samad from Jharkhand returned for review after three months. He experienced swelling around the knee with visible redness and was also diagnosed with an osteochondroma on the femur. Dr. Madhuri prescribed Montelukast for long-term care, along with Naproxen and Prednisolone for short-term flare-up relief. His case underlines how FOP can affect mobility at a very young age, making early intervention critical.
Akshat’s Case – Confirmed Genetic Diagnosis
Two-year-old Akshat from Jodhpur, Rajasthan was recently confirmed to have FOP through genetic testing (mutation c.617G>A). Despite a severe swelling on his back, he maintains good mobility and jaw function. Dr. Madhuri recommended preventive medication, including Montelukast and Prednisolone, and requested imaging to guide future treatment. This early diagnosis and proactive care give his family a structured plan moving forward.
Looking Ahead
Across these cases, one pattern stands out: early consultation and targeted prescriptions prevent further complications. From managing flare-ups to long-term respiratory and mobility care, personalized strategies continue to provide patients and families with hope.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/