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 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 […]
Managing Fibrodysplasia Ossificans Progressiva (FOP) goes far beyond responding to flare-ups. Ongoing, consistent follow-up care is a critical element in maintaining patient health and minimizing complications. Recent updates from FOP Trust India show how essential this is. Patients like Devananda and Ashik weren’t just treated once—they received follow-up consultations with Dr. Vrisha Madhuri, had their […]
Managing Fibrodysplasia Ossificans Progressiva (FOP) goes far beyond responding to flare-ups. Ongoing, consistent follow-up care is a critical element in maintaining patient health and minimizing complications. Recent updates from FOP Trust India show how essential this is. Patients like Devananda and Ashik weren’t just treated once—they received follow-up consultations with Dr. Vrisha Madhuri, had their […]
For a rare disease like Fibrodysplasia Ossificans Progressiva (FOP), early recognition can mean the difference between careful management and avoidable harm. Because FOP is so rare—affecting roughly 1 in 2 million people—most general practitioners and pediatricians may never encounter a case during their careers. That’s why educating families and frontline health workers about the early […]
For a rare disease like Fibrodysplasia Ossificans Progressiva (FOP), early recognition can mean the difference between careful management and avoidable harm. Because FOP is so rare—affecting roughly 1 in 2 million people—most general practitioners and pediatricians may never encounter a case during their careers. That’s why educating families and frontline health workers about the early […]
Early recognition of FOP symptoms remains one of the most important goals in improving patient outcomes. Misdiagnosis often leads to harmful treatments such as biopsies or unnecessary surgeries that can worsen the condition. Most people with FOP show early signs such as malformed big toes and unexplained swellings or stiffness. However, due to a lack […]
Many people still misunderstand Fibrodysplasia Ossificans Progressiva (FOP). Some believe it’s a form of arthritis or the result of injury. Others confuse its symptoms with tumors or infections. These misconceptions lead to dangerous decisions, including unnecessary surgeries and misdiagnoses. FOP is not caused by trauma. It is a genetic condition rooted in a mutation of […]
