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 […]
Why Early Recognition is Crucial Fibrodysplasia Ossificans Progressiva (FOP) is extremely rare, yet its first signs often appear early in life. Children may show stiffness, swelling, or unusual lumps. Because the disease is not widely known, these symptoms are often mistaken for cancer or arthritis. Misdiagnosis can lead to dangerous procedures, such as biopsies or […]
A Global Network with Local Impact The International FOP Association (IFOPA) stands at the heart of global rare disease support. Its mission goes beyond research—it empowers families with practical knowledge, resources, and community connections. For families in India, IFOPA’s global support makes an everyday difference. Trusted Tools for Families Through IFOPA’s learning resources—translated guides, flare-up […]
Ashik, a young boy from Chennai, faced one of his toughest moments in mid-August. A painful flare-up with skin rashes brought him to the emergency department of Amara Hospital. Under the care of Dr. Vrisha Madhuri, he received immediate treatment and recovered well enough to return home the next day. A few days later, Ashik […]
Every year on August 15, India celebrates Independence Day — a reminder of the sacrifices that brought us freedom. For people living with Fibrodysplasia Ossificans Progressiva (FOP), independence means something deeply personal. It’s the ability to move safely, breathe well, and make informed choices about their own health. Freedom Through Knowledge Early diagnosis is the […]
The FOP Trust’s field team spent early August expanding its support network. After connecting with orthopedic specialists at the Bengaluru Ortho Conference, follow-up requests were sent to doctors like Dr. Abisek and Dr. Raj Singh to share patient details and join the referral system. These connections are vital for identifying new cases early. By adding […]
Living with Fibrodysplasia Ossificans Progressiva (FOP) means facing daily risks. But some of the most powerful protections come from simple tools. In August, the FOP Trust focused on teaching families how to use helmets and spirometers effectively. Why Helmets Matter Even a small fall can be dangerous for someone with FOP. Head injuries can trigger […]
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) continues to be a lifeline for families navigating this rare and complex condition. Their online library offers practical, patient-tested resources—covering everything from flare-up management to oral care tips—that help families feel more prepared for everyday challenges. In August, several Indian families benefited from IFOPA’s translated emergency care cards […]
