This week focused on prevention of flare-ups and fast management of new swelling cases across multiple states. đš Mayeshree from Manipur had a follow-up after her pamidronate therapy three months ago. While she is doing well, Dr Vrisha advised a second pamidronate cycle as precaution to prevent possible flare-ups.Instructions and medication protocol were sent to […]
This week showcased the power of preventive care through the story of 10-year-old Mayeshree from Manipur. After receiving pamidronate infusion three months ago, her family attended a review consultation as planned. Even though she had no pain or swelling, Dr Vrisha advised a second treatment cycle to prevent future flare-ups before they begin. Blood calcium […]
This week, Selva Kumar played a major role in ensuring continuity of treatment for families in remote and distant locations. His responsibilities included:âď¸ Arranging online consultationsâď¸ Sharing treatment protocols with local hospitalsâď¸ Coordinating pamidronate access for families outside Tamil Naduâď¸ Continuous communication with Amara Hospitalâs medical team A major highlight was helping Arzaan from Nagpur […]
Beyond medical coordination, this week also supported public awareness and sensitization. đŽââď¸ A special FOP Awareness Training Program for Police Personnel was conducted during their in-service training session. The session covered: The participation and interest from officers reinforced that awareness beyond the medical community is equally important in preventing avoidable harm.To learn more, visit: https://foptrust.org/For […]
Every treatment step this week â whether preventive or reactive â aligned closely with IFOPAâs international clinical care guidelines, especially regarding: đš Timing of pamidronate post-flaređš Secondary pamidronate cycle for preventative caređš Monitoring calcium levels after infusionđš Review timeline after flare-up medicationđš Educating local doctors for safe administration instead of risky general treatment The outcomes […]
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 resourcesâcovering everything from flare-up management to oral care tipsâthat help families feel more prepared for everyday challenges. In August, several Indian families benefited from IFOPAâs translated emergency care cards […]
The International FOP Association (IFOPA) was founded in 1988 by Jeannie Peeper, one of the first individuals diagnosed with Fibrodysplasia Ossificans Progressiva (FOP). From a small patient-led initiative, IFOPA has evolved into a global organization that champions FOP awareness, supports groundbreaking research, and empowers patients and families around the world. FOP is one of the […]
For most people, Fibrodysplasia Ossificans Progressiva (FOP) is an unfamiliar wordâcomplex, obscure, and distant. But for families living with it, FOP is a daily reality that affects every aspect of life. Thankfully, community-led efforts, international collaboration, and generous individuals are changing what it means to live with this condition. At the heart of this change […]
Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest and most disabling genetic conditions known to medical science. But amidst the uncertainty it brings, there stands a powerful global force dedicated to advocacy, research, and supportâthe International FOP Association (IFOPA). Since its inception, IFOPA has played a crucial role in uniting the global FOP community, […]
FOP Trust India is a lifeline for individuals and families affected by Fibrodysplasia Ossificans Progressiva (FOP), a rare and debilitating genetic condition. Every day, the trust works behind the scenes to offer unwavering support to patients across India and neighboring countries, combining compassion with commitment in ways that are truly remarkable. At the heart of […]
