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 […]
FOP research has made exciting strides lately. Several drugs under development show promise in slowing or preventing heterotopic bone formation (HO) and improving quality of life. Here’s what’s new: 🔬 Key Investigational Drugs ⚠️ What These Mean for Patients 🔍 Looking Ahead Research continues at a fast pace. With each trial, we gain better understanding […]
Living with Fibrodysplasia Ossificans Progressiva (FOP) often feels overwhelming for families. The disease is rare, unpredictable, and every flare-up brings fear of what might happen next. But clear, written protocols transform this uncertainty into confidence. Why Protocols Matter Families often face split-second decisions—whether to go to the hospital, which medicines to give, or how to […]
The first week of September brought important lessons about managing FOP flare-ups with safe, evidence-based care. Every consultation reinforces that managing FOP is not just about medication—it’s about making the right decisions at the right time, guided by expertise and trust. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/
The first week of September brought important lessons about managing FOP flare-ups with safe, evidence-based care. Every consultation reinforces that managing FOP is not just about medication—it’s about making the right decisions at the right time, guided by expertise and trust. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/
Global Research Momentum Fibrodysplasia Ossificans Progressiva (FOP) remains one of the rarest and most complex genetic conditions, but research around the world is gaining momentum. Scientists continue to focus on the ACVR1 gene mutation, which causes muscles, ligaments, and tendons to turn into bone. By studying how this mutation activates unwanted bone growth, researchers are […]
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 […]
In August 2025, two young patients, Anushka from Rajasthan and Akshat from Jodhpur, showed the many faces of living with Fibrodysplasia Ossificans Progressiva (FOP). Their stories highlight how timely medical guidance and trust-supported care can make a difficult journey a little lighter. Anushka’s Strength Through Stiffness At just 18, Anushka has faced FOP’s challenges head-on. […]
Flare-Ups Continue to Teach Us August brought new lessons on managing flare-ups in FOP patients across India. Children like Ashik from Tamil Nadu and Durga Bavani from Andhra Pradesh experienced painful swellings. With timely support from FOP Trust, both received quick online consultations with Dr. Vrisha Madhuri. She prescribed targeted medication and scheduled follow-ups, ensuring […]
July brought important reminders about the urgency and effectiveness of early flare-up management for FOP. With several children—including Ashik and Devananda—experiencing painful swellings, the month’s learnings centered on fast intervention and holistic preventive care. The FOP Trust responded quickly by arranging online consultations with Dr. Vrisha Madhuri, who prescribed medications tailored to each case. Early […]
