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 […]
The FOP Trust field team made significant strides in expanding its referral network during July 2025. Key outreach efforts included visits to Tamil Nadu State Children’s Hospital in Chennai and Indira Gandhi Children’s Hospital in Bengaluru. These hospitals responded positively and agreed to refer children suspected of having FOP to the Trust. In addition to […]
Living with FOP presents daily risks, but many of these can be managed with small, strategic tools. In July, FOP Trust India focused on equipping families with essential safety items like helmets and spirometers—tools that may seem minor, but make a significant impact on quality of life. As mobility changes, children with FOP face higher […]
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 […]
While IFOPA is a global organization, its greatest strength lies in how its tools make a difference at the local level. Through translated guides, emergency medical information, and patient handbooks, families across India are better equipped to manage the rare condition of Fibrodysplasia Ossificans Progressiva (FOP). In July, several families in India used IFOPA’s resources […]
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 […]
